Background

Dysphagia is a chronic health condition that causes a dysfunction in the ability to eat and drink and can occur in a variety of conditions, including stroke, neurodegenerative diseases, brain tumors, and head and neck cancer. It can also occur as part of the normal aging process [1]. It is estimated that 25%–62% of stroke patients experience dysphagia as a result of neurological defects [2]. Dysphagia in patients with Parkinson’s disease is caused by decreased muscle function, with symptoms worsening as the disease progresses, and 77%–95% of them experience dysphagia [3]. In patients with head and neck cancer, dysphagia can occur as a result of anatomical defects and decreased sensation or mobility in the course of surgery and radiation therapy [4]. Even without pathological conditions, aging can change swallowing by deteriorating physical, sensory, and motor functions, and the incidence of dysphagia in the elderly ranges from 11% to 35% [5].

Patients with dysphagia experience increased fear of eating, prolonged loss of appetite, malnutrition, and serious complications such as aspiration pneumonia and airway obstruction, which can lead to death by decreasing the ability to eat or drink [6]. People with dysphagia experience symptoms such as coughing, nausea, drooling, and difficulty chewing when eating, which can lead to loss of joy in eating, increased fear, and low self-esteem. In addition, as fear of aspiration pneumonia or choking increases and meal times are extended, patients experience burnout, depression, and anxiety [7]. If oral feeding is not possible due to dysphagia, enteral nutrition can be administered through a nasogastric or gastrostomy tube to prevent malnutrition and provide safe nutrition [8]. However, eating and drinking are two of the most essential human needs, and they are activities that represent a country’s culture and individual identity and maintain social relationships with others. While feeding with enteral nutrition can be life-sustaining, losing the various functions of consuming foods can impair social and physical functioning [9]. Prolonged enteral nutrition is also recognized as preparing patients for death [10]. As such, dysphagia affects poor nutrition, limitations in basic activities of daily living and social life, and mood disorders, all of which contribute to poor quality of life (QOL) [11].

Objectives

Therefore, I conducted a literature review on the QOL in patients with dysphagia to identify the association of demographic, physical health, and mental health characteristics and examine the QOL measurement tools and intervention programs in these patients.

Total 12 articles were reviewed in this study: 5 experimental, 6 survey, and 1 qualitative. Study participants include stroke patients, Parkinson’s disease patients, esophageal cancer patients, head and neck cancer patients, and the elderly with symptoms of dysphagia (Table 1).

Table 1

Literature review articles

No.	Reference	Research method	Research subject	Metric	Quality of life measurement tool
1	Chen et al., 2018 [17]	Experimental research	Oral cancer patients with dysphagia (38 in the test group and 38 in the control group)	Swallowing ability, depression, and swallowingrelated quality of life Intervention: swallowing exercise education program	MD Anderson Dysphagia Inventory
2	Zhen et al., 2012 [18]	Experimental research	Oral cancer patients with dysphagia (46 in the test group and 46 in the control group)	Swallowing skills, quality of life Intervention: swallowing training protocol	MD Anderson Dysphagia Inventory
3	Chagan-Yasutan et al., 2020 [21]	Experimental research	Esophageal cancer patients with dysphagia (21 people)	Quality of life Intervention: mind–body interactive psychotherapy	EORTC QLQ-OES18 QLICP-OES
4	Song et al., 2012 [20]	Experimental research	Dysphagia head and neck cancer (23 people)	Swallowing, meal phases, quality of life Intervention: swallowing rehabilitation	EORTC QLQ-HN35
5	Kim et al., 2011 [19]	Experimental research	Stroke patients with dysphagia (38 people)	Self-exercise satisfaction, quality of life Intervention: swallowing exercise video program	Swallowing-Quality of Life
6	Morisaki, 2017 [13]	Survey research	Older adults with dysphagia (225 people)	Swallowing, health-related quality of life	SF-8
7	Leow et al., 2010 [7]	Survey research	32 Healthy adults and seniors and 32 Parkinson’s patients with dysphagia	Swallowing-related quality of life	Swallowing-Quality of Life
8	Kim, 2016 [12]	Survey research	Patients with dysphagia (87 people)	Depression, social isolation, and quality of life	Purpose in Life Test
9	Cha et al., 2010 [14]	Survey research	Patients with dysphagia (58 people)	Dietary phases, swallowing, quality of life	Swallowing-Quality of Life
10	Kim et al., 2020 [16]	Survey research	Parkinson’s patients (18 people)	Swallowing skills, quality of life	Swallowing-Quality of Life (Korean version)
11	Kim and Park, 2014 [15]	Survey research	Older adults with dysphagia (260 people)	Swallowing function, swallowing-related quality of life	MD Anderson Dysphagia Inventory
12	Kim et al., 2014 [9]	Qualitative research	Stroke patients with dysphagia (5 people)	Exploring the essence of enteral nutrition experience in stroke patients with dysphagia	-

EORTC = European Organization for the Research and Treatment of Cancer; QLQ-OES18 = Questionnaire-Oesophageal Cancer Module; QLICP-OES = Quality of Life Instruments for Cancer Patients-Oesophageal Cancer; EORTC QLQ-H&N35 = EORTC Quality of life-Head and Neck Cancer Module; SF-8 = Short Form-8 Health Survey.

Demographic, physical, and mental health characteristics and therapeutic interventions were examined as factors associated with QOL in patients with dysphagia. Demographic characteristics include age, gender, education level, economic level, religion, marital status, family composition, dietary pattern, and daily activities, while physical health characteristics include the number of diagnosed chronic diseases, number of medications taken daily, denture use, type of dysphagia symptoms, severity of dysphagia, and duration of dysphagia. Mental health characteristics included depression, insomnia, and social isolation, and therapeutic interventions included swallowing motor training, swallowing rehabilitation, and mind–body interactive psychotherapy interventions.

Five tools were used to measure the QOL in patients with dysphagia: the MD Anderson Dysphagia Inventory, the European Organization for Research and Treatment of Cancer QOL Questionnaire, the Swallowing QOL, the Short Form-8 Health Survey, and the Purpose in Life Test. The items on each measurement tool include limitations in daily activities due to dysphagia, embarrassment when eating, difficulty in swallowing, restrictions on going out and loss of job, extended meal times, limitations in relationships and social life, restrictions on how much to eat, weight loss, low self-esteem, and feelings of isolation.

Demographic characteristics and QOL in patients with dysphagia

When looking at the demographic characteristics and QOL in patients with dysphagia, there were significant differences in the QOL based on education level and age. A college degree or higher was associated with a higher QOL than no education or a middle school diploma (F=3.44, P=0.012), and in terms of age, those aged 30–49 had a higher QOL than those aged ≥60 (F=2.54, P=0.046) [12].

There were significant differences in the risk of dysphagia in the elderly by family composition and the number of family members living with them. The risk of dysphagia was lower among the elderly living with a partner or living with two or more generations than among those living alone (P<0.001). Dysphagia risk and health-related QOL were negatively correlated in the elderly, with significantly lower health-related QOL associated with higher dysphagia risk (P<0.001) [13].

This study examined the correlation between dietary stages and dysphagia QOL in patients with dysphagia by dividing the dietary stages into five categories. Stage 1 is parenteral nutrition with enteral and intravenous feedings, and stage 5 is a normal oral diet, including water. Between stages 1 and 5, patients are divided into staged dysphagia diets, with stage 1 consisting of ground porridge, dairy products, and ground side dishes, and stage 2 including unground porridge, chopped side dishes, and soft soup. Stage 3 of the dysphagia diet consists of wet cooked rice, soft side dishes, and soup, while stage 4 consists of water and a normal diet with a viscosity enhancer. In patients with dysphagia, age was negatively correlated with the width of the dietary stage improvement (r=−0.52), and the width of the dietary stage improvement was positively correlated with swallowing-related QOL (r=0.44). This suggests that older age is associated with poorer anatomical and physiologic function, leading to dysphagia and lower QOL [14]. This is similar to a study that found that dietary stage was a statistically significant variable in explaining differences in QOL, with enteral nutrition resulting in lower QOL than oral feedings, with a highly statistically significant difference (F=12.10, P<0.001), and dietary stage was the variable with the greatest impact on QOL in patients with dysphagia (β=−0.57, P<0.001) [12].

A phenomenological study on the experience of enteral nutrition in stroke patients with dysphagia found that patients experience the most primal and instinctive human need for taste and the feeling of hunger because enteral nutrition does not involve taking food by mouth, and that enteral nutrition often requires the insertion of a nasogastric tube or percutaneous endoscopic gastrostomy (PEG), which can lead to decreased QOL due to experiencing disturbed body image, low self-esteem, and depression [9].

Physical health characteristics and QOL in patients with dysphagia

In terms of physical health characteristics and QOL in patients with dysphagia, Parkinson’s disease patients experiencing dysphagia reported difficulties due to dysphagia compared to healthy adults and the elderly, including more difficulty choosing food (P=0.002), taking longer to eat (P=0.005), having increased fear of eating (P=0.007) and fatigue (P=0.002), and having lower mental health (P=0.001), social functioning (P=0.002), and swallowing-related QOL (P=0.001) scores [7].

In the elderly, the number of chronic diseases, number of medications taken per day, neurologic diseases and gastritis among those chronic diseases, and denture use were significantly associated with dysphagia: the number of chronic diseases was 1.78 in those at risk for dysphagia compared to 1.40 in those not at risk for dysphagia (P=0.012), the number of medications per day was 3.08 in those at risk for dysphagia compared to 2.27 in those not at risk for dysphagia (P=0.021), and 84 patients (51.9%) used dentures in the dysphagia risk group; and the prevalence of chronic diseases was higher in the dysphagia risk group than in the non-dysphagia risk group, with 8.6% (P=0.007) for neurologic diseases and 15.4% (P=0.018) for gastritis [15]. Among the types of chronic diseases, brain neurologic diseases and gastritis had a significant impact on dysphagia in the elderly, which is consistent with previous studies showing a higher prevalence of dysphagia in people with neurologic diseases such as stroke and Parkinson’s disease. In the elderly, dysphagia risk and swallowing-related QOL were negatively correlated, with higher dysphagia risk associated with significantly lower swallowing-related functional status and socio-psychological well-being (P<0.001) [15].

The duration of dysphagia was negatively correlated with swallowing-related QOL (r=−0.48), with a longer duration of dysphagia associated with lower QOL [14]. In Parkinson’s disease patients, difficulty with choosing food increased with disease severity (P=0.014), and the inability to take food orally was associated with lower swallowing-related QOL scores (P=0.018) [7].

Decreased peak pressure at the front of the tongue in Parkinson’s disease patients was correlated with dysphagia by increasing the risk of aspiration but did not show a statistically significant correlation with swallowing-related QOL. However, among the swallowing-related QOL items, social functioning, sleep, and fatigue were significantly correlated, indicating that the more severe the dysphagia, the greater the difficulty in social life, such as eating out, and the more sleep disturbance and fatigue due to repeated aspiration-related complications [16].

Mental health characteristics and QOL in patients with dysphagia

In terms of mental health characteristics and QOL in patients with dysphagia, depression (r=−0.30, P=0.005), social isolation (r=−0.36, P=0.001), and meaning of life (r=0.34, P=0.001) were all statistically significantly correlated with QOL in patients with dysphagia: those who were depressed had lower QOL than the non-depressed ones (t=3.29, P=0.001), those with moderate or higher social isolation had a lower QOL than those with low social isolation (F=7.39, P=0.001), and those with no clear meaning of life had a lower QOL than those with a clear purpose of life (t=−2.72, P=0.008), confirming that depression and social isolation are factors that reduce QOL in patients with dysphagia [12]. Among the elderly at high risk for dysphagia, the prevalence of depression or insomnia was 9.3% (P=0.044), higher than the 3.1% in the group without dysphagia risk [15].

Intervention programs for patients with dysphagia

Intervention programs for patients with dysphagia included swallowing motor training programs, rehabilitation, and mind–body interactive psychotherapy interventions.

In a study of 76 oral cancer patients (36 in the test group and 36 in the control group) using a swallowing exercise education program (1. personal assessment, including swallowing ability and performance status; 2. explanation of the anatomy and physiology of the oral cavity, pharynx, and esophagus, mechanisms and stages of swallowing, and side effects of the disease and treatment; 3. training and practice of swallowing exercises; 4. how to swallow different types of food; and 5. ongoing emotional support and the need to see a doctor for changes in condition), the program was provided twice a week for 6 months, and participants performed the program three times daily. After the program, swallowing function, depression, and swallowing-related QOL were examined. Depression was found to be significantly improved in the experimental group with significantly lower depression scores, but there were no significant differences in swallowing function and QOL [17]. However, in another study in patients with oral cancer, a swallowing training program for 30 minutes 6 days a week for 2 weeks improved swallowing function (P<0.01) and QOL [18]. Zhen et al. [18] studied tongue cancer patients, and Chen et al. [17] studied patients with advanced cancer stages (stages 3 and 4), mostly in the buccal and tongue sub-regions, which may have been influenced by the disease characteristics of the study participants. However, the difference in the duration of the intervention and the number of interventions per week between the two studies may be a factor affecting QOL, so further studies, including objective indicators, are necessary.

Thirty-eight stroke patients with dysphagia were given a self-exercise video program (consisting of organized swallowing exercises by region: throat, lip, tongue, the base of the tongue, soft palate, laryngeal elevation, and vocal cord retraction exercises) five times a week (30 minutes per session) for 3 weeks. When examining changes in swallowing-related QOL afterward, there were statistically significant differences (P<0.05) in nine items except for mealtimes and sociality: worry, need to have a meal, symptom frequency, food choice, communication, fear, mental health, fatigue, and sleep. This suggests that the swallowing self-exercise video program helped patients feel motivated and purposeful about their rehabilitation, restoring their confidence and reducing fear, worry, fatigue, sleep disturbances, and mental health issues associated with dysphagia. This had a positive effect on swallowing function as well, leading to a change in dietary pattern: 24 (63.1%) L-tube enteral feeding, 2 (5.3%) PEG enteral feeding, 5 (13.2%) combined oral and enteral feeding, 5 (15.8%) swallow-assisted feeding, and 1 (2.6%) regular diet before the intervention to 10 (26.4%) L-tube, 0 (0%) PEG, 3 (7.9%) combined oral and enteral feeding, 19 (50%) swallow-assisted feeding, and 6 (15.8%) regular diet after the intervention, indicating significant changes in dietary pattern. Improved swallowing function enhances the QOL by allowing patients to make food choices and satisfaction with communication by improving the ability to pronounce words. There was also a significant correlation between self-exercise satisfaction and swallowing-related QOL (r=0.475, P<0.05) [19]. The results showed that the self-exercise video program had a positive impact on QOL due to increased motivation and confidence, knowledge of dysphagia and self-exercise, and awareness of the importance of self-exercise.

Twenty-three patients with head and neck cancer diagnosed with dysphagia were provided with swallowing rehabilitation therapy (postural techniques including head adjustment, compensatory techniques such as controlling the size of the food chunk served and controlling the viscosity of the food, and techniques to improve the joint range of motion and muscle strength of the oral and throat structures and improve sensorimotor function) 2–3 times a week for 16 weeks. The results of surveying swallowing function and QOL showed a significant improvement in swallowing function from 62.50±28.33 to 52.31±30.89. While most of the QOL items showed no significant change, the item on social contact decreased from 58.52±30.12 to 43.33±32.84, indicating a significant improvement in QOL for social activities as swallowing function was improved [20].

A study that applied Mongolian mind–body interactive psychotherapy (music therapy, exercise, disease-related case education, hypnotherapy, etc.) to 21 patients with esophageal cancer found that the patients’ eating problems were improved (P=0.04), which in turn improved their physical and psychological functioning (P<0.0001 and P<0.05), but showed no significant difference in social functioning (P=0.07) [21].

This literature review demonstrated that the QOL in patients with dysphagia is related to disease severity, age, education level, and family type and that patients with dysphagia experience increased depression, anxiety, and social isolation as they struggle to eat orally, leading to a decrease in QOL.

The management of patients with dysphagia requires interventions to improve QOL that take into account physical, mental, and social aspects. However, when searching for relevant papers through RISS & PubMed search engines for this review, only 15 Korean papers on the QOL in patients with dysphagia were found, and most of the experimental studies on these patients focused on the management of physical symptoms of dysphagia and interventions to improve swallowing function.

Dysphagia is a situation that requires attention and intervention not only for the management of physical symptoms but also for the overall life of the patient, and it may be necessary to develop intervention programs that can improve the QOL in patients with dysphagia based on concrete and practical experience.

The author of this manuscript has no conflicts of interest to disclose.

None.

None.

None.

None.