Experiences and requirements in nutritional management of patients with esophageal cancer: a systematic review and qualitative meta-synthesis

Most EC patients experienced significant changes in their perception of diet at the start of treatment and rehabilitation, often accompanied by difficulties in swallowing, loss of appetite, nausea, vomiting, reflux, and alterations in taste and smell [14‐17, 24, 27‐29, 31‐34, 36, 37]. Some patients realized that eating was more challenging than they had imagined, describing eating as painful, uninteresting, or even aversive, and thus relied on nutritional supplements rather than consuming food [24]. Statements from patients included, “Food does not bring me joy; I do not look forward to meals nor care about what to eat.” [31] and “I noticed that during the period when I started eating less, I used more salt and ate more strongly flavored foods” [29].

Patients experienced disruptions in body image [16, 17, 24, 31]. One patient stated, “When will this tube (nasogastric tube) on my nose be removed? It looks so unattractive” [17]. Another wished to gain weight to be able to wear his clothes and look like he did before [24]. These changes affected their body perception and led to a sense of detachment from their own bodies [17, 24, 31].

During early rehabilitation, many patients actively adapted to their current dietary conditions [27‐33, 36, 37], for instance, “I’ve given eating a lot of thought. It’s not easy. I have a lot of learning to do and trying to get myself back to society, going to parties…” [32]. However, other patients realized that eating was more challenging than they had imagined. Despite guidance from healthcare professionals, patients still needed to exert effort, “Willpower and self-control are necessary for maintaining the stability of eating behaviors” [30].

The majority of EC patients wished to actively participate in dietary decision-making related to dietary plans during their treatment process [23, 24]. For instance, a patient related how the nurse ordered enteral nutrition without asking him. The equipment was delivered to his home [23]. Patients also mentioned that the guidelines of nutritionists and manuals lacked universality, and patients were not involved in the construction of dietary plans based on their own experiences [30]. Only a minority of patients actively engaged in self-directed learning and proactive experimentation to identify suitable diets [30].

Most of the EC patients were unable to eat as they had before treatment and thus had to change their dietary habits [28]. Some patients received postoperative enteral nutrition through jejunostomy, some received parenteral nutrition, while others followed traditional postoperative diets [24, 32, 34]. A patient receiving enteral nutrition described the challenges of having a nasogastric tube, especially obstruction which hindered medication intake [34]. In terms of food choices, most patients experimented to identify food they could swallow [28, 30], often avoiding dry foods [29]. As described, “…It was a bit disorganized, as I tried different foods to see if I could eat them or not” [28] and “I am trying to eat something I want. It is no longer a choice; the food options are limited” [30]. Furthermore, many patients experienced changes in the amount of food they could consume due to reduced postoperative gastric capacity or the lack of a sense of satiety [28‐30, 36]: “I used to eat two bowls of rice per meal, but now I feel full after eating a small half-bowl. If I eat more, I feel like I can’t swallow, and my stomach becomes bloated” [16]; “The most unpleasant situation is when I eat too much, and it gives me stomach pain. So, I have to be careful not to eat too much at once or eat too quickly to avoid feeling uncomfortable” [28]. In terms of meal frequency, patients with oral intake often preferred to “eat more frequently during the day with smaller portions than eating a large meal once or twice a day” [29]. Patients also tried to change their posture and behavior to promote digestion, such as “After eating, don’t lie down or move around to help digestion” [30]. Some patients also avoided eating before going out to prevent unnecessary side effects of eating, especially dumping syndrome [26].

During treatment and rehabilitation, EC patients experienced anxiety and tension resulting from poor long-term dietary intake, digestive symptoms, and changes in body image, leading to a loss of confidence [15‐23, 36, 37]. At discharge, some worried that neither they nor their family members were adequately prepared [32, 34], “I’m worried about my wife; she’s not a nurse” [32]. Others were concerned that incorrect eating that would adversely affect healing of surgical incisions, “The doctor says I can eat anything, but I’m still afraid. What if I accidentally disrupt the wound” [17]. At home, changes in dietary habits and preferences often disrupted family routines [28, 29, 36, 37] and family members would sometimes adapt their own eating patterns to accommodate the patient’s diet. This caused patients to feel guilty, increasing their psychological burden [29, 36].

As treatment and rehabilitation progressed, some patients experienced difficulty in the effective control of symptoms, leading to doubt about treatment efficacy and their capabilities [14, 25]. This could lead to compromise and a belief that everything was predetermined by fate, “These days, I eat less, and I’m not as energetic as before. I’ll take it one step at a time. Being alive is a miracle; It’s all fate” [14].

Some patients mentioned that receiving enteral nutrition twice daily during hospitalization restricted their time for other activities [16, 27, 29, 33, 36, 37]. After discharge, wearing a J-tube tended to lead to reduced enjoyment in eating and frustration about recovery, “I have had enough of being attached to a pole” [24]. Patients were reluctant to participate in social activities, resulting in a sense of loneliness [34]. Extended treatment and follow-up also affected confidence, as well as insufficient support from family caregivers, leading to feelings of helplessness [14, 17, 34, 35].

After discharge, patients often avoided social interactions due to changes in eating behaviors [14, 15, 27‐29, 31, 33, 36, 37]. For instance, “If you would say: ‘Let’s go out for dinner this week’, I would say: ‘It’s better not to. I may not be the best company’” [29]. Some patients felt embarrassed to eat in public [14, 15, 23, 29, 30, 33, 36], mainly due to symptoms after eating, and changes in eating behaviors, such as the needing to order small portions.

During rehabilitation, some family members could be overprotective. As one patient described, “Many people tell you to sit down and do nothing” [25]. This attitude hindered the patient’s adaptation to different social role, led to feelings of frustration and low self-esteem, and reduced feelings of autonomy and confidence in their rehabilitation [14, 25]. As a patient further expressed, “People didn’t ask me to do anything because they said, ‘We don’t want to burden you.’ This made me feel worse because now I felt different from others” [25].

As one patient described, “It’s important to have somebody’s footsteps to follow. If he can do it, I can do it. It gave me a lot of confidence” [27, 34]. However, peer support is often limited, and most patients reported never encountering individuals or organized groups with similar experiences. Expressions of the advantages of peer support included, “I had never met anyone with esophageal cancer before this (group)” [25, 28] and “There should be more support groups. It’s nice to be able to chat to other people—it makes you feel normal” [25].

The majority of patients or caregivers reported a lack of professional nutritional support and guidance while waiting for chemotherapy or home rehabilitation [14‐17, 25, 28, 34, 35, 37]. Family caregivers mentioned concerns such as, “If the nasogastric feeding isn’t done properly, the patient may have diarrhea. It’s just getting better today; I’m really afraid that he’ll have diarrhea again” [17]. There was a need for practical assistance and continuous professional care [14, 16, 17, 35]. As some patients expressed, “…We don’t have regular check-ups to see how we’re doing and what dietary changes we can make….” [28].

It was apparent that there were many shortcomings in the nutritional management systems of medical institutions. Firstly, nutritionists lacked standardized nutritional training programs [16, 34, 35]. One patient suggested that nutritionists should clearly define the start of recovery and provide better guidance on rehabilitation [34]. Secondly, medical institutions often lack comprehensive dietary provisions for the nutritional requirements of hospitalized patients [35]. A caregiver complained, “The hospital doesn’t provide an appropriate cooking environment for family caregivers. Also, the patient has severe dysphagia and dentures…making it difficult for them to eat” [35]. Additionally, there were severe shortages of nutritional experts and inadequate allocation of dedicated personnel [35]. As described, “Our nurses still lack nutritional knowledge and need nutritional experts or dedicated personnel to provide more specialized guidance to patients” [35].