Does Fear of Movement Affect Fatigue and Quality of Life in Lower Extremity Lymphedema?

Abstract

Background:

The aim of our study was to determine the causes of lower extremity kinesiophobia (whether it is biological or psychological) in individuals with lower limb lymphedema (LLL), and to compare the changes in fatigue and activities of daily living with healthy individuals.

Methods:

The study included 74 unilateral LLL patients (study group) and 74 individuals (control subjects). Causes of fear of movement were assessed with the Causes of Fear of Movement questionnaire; fatigue, with the Functional Assessment of Chronic Disease Treatment-Fatigue Questionnaire; and quality of life (QoL) with the Lymphedema Quality of Life Questionnaire-Leg.

Results:

One hundred forty-eight participants were included in the study, 74 of whom were in the study group and 74 in the control group. 63.5% of the lymphedema patients had primary lymphedema and 36.5% had secondary lymphedema. Fear of movement total score and QoL scores was higher in LLL group than control group. Total fear of movement score and biological subparameter score of fear of movement, fatigue, and some subparameters of QoL scores were found to be higher in primary LLL patients compared with secondary LLL.

Conclusion:

Fear of movement is common and QoL is impaired in patients with secondary LLL, more significant in primary LLL.

Introduction

Lymphedema is a condition characterized by the accumulation of protein-rich fluid in the interstitial space. Although it may develop due to congenital (primary) reasons, secondary lymphedema that develops after cancer surgery is frequently encountered in the clinics.¹ This chronic disease can negatively affect the lives of individuals' functionally and psychologically. If the disease is not treated, it can lead to an increase in the severity of the affected extremity lymphedema, inflammation, and the development of symptoms such as pain, numbness, heaviness in the arm, and fatigue, as well as cellulitis and ulcers. With these symptoms, limitation in affected extremity movements, function disability, and impairment of quality of life (QoL) have been reported in patients with lymphedema.²

Kinesiophobia can be defined as the withdrawal of individuals from physical activity for no reason. It is based on biological and psychological foundations and the development of kinesiophobia negatively affects daily life. It has been reported in the literature that patients with pain in the musculoskeletal system stay away from moving in order not to increase the pain, and their functional capacity and daily living activities are negatively affected.³ In particular, individuals who have undergone breast cancer surgery avoid even the most basic activities of daily living in their upper extremity due to lack of knowledge or overprotective approaches. In patients with lymphedema, there is a belief that using the affected extremity will increase the severity of lymphedema.^4,5 The development of lymphedema in the lower extremities may cause individuals to adopt a more immobile approach.

Withdrawal from the community can be seen in patients with lower extremity lymphedema due to cosmetic deformity caused by the size of the extremity volume, accompanying lymphedema symptoms, and difficulty in finding suitable shoes/socks.⁶ The decrease in this level of mobility can lead to fatigue in the most basic activities (going to the bathroom, opening the door, etc.).⁷ However, in the literature, the operation of the muscle-joint pump, the activation of the muscle system, rather than increasing the severity of lymphedema, causes the lymphedema to move away from the relevant extremity.⁸ There are very few studies investigating kinesiophobia in patients with lymphedema, mostly in upper extremity in the literature,^5,9,10 and there is only one study investigating the kinesiophobia in patients with lower limb lymphedema (LLL).⁶

Therefore, the aim of our study was to determine the comparative prevalence of kinesiophobia, fatigue, and QoL (whether it is biological or psychological) in individuals with either primary and secondary LLL and healthy controls. We also aimed to evaluate the related factors with kinesiophobia.

Methods

The study was carried out in Ankara City Hospital Lymphedema unit within the framework of the Helsinki Declaration Principles. Ethical approval was obtained from the local clinical research ethics committee (E2-21-407). All participants were informed about the study and gave their consent for the study.

Patients with unilateral LLL who had submitted to lymphedema unit of the Physical Medicine and Rehabilitation Department in Ankara City Hospital were recruited between November 2021 and March 2022 and included 74 unilateral LLL patients (study group) diagnosed with lymphedema according to International Society of Lymphology¹¹ and 74 healthy individuals (control group) with no lymphedema or edema in their extremities. The control group consisted of hospital staff and patient companions who have volunteered for study. A total of 148 individuals participated in the study.

Inclusion criteria for the study group were 18–65 years of age, having unilateral lower extremity lymphedema, not having any orthopedic disorders in the lower extremities, and volunteering to participate in the study. Those who did not volunteer to participate in the study, those with bilateral lower extremity lymphedema, those with mental cognitive problems and those with metastases were not included in the study. The inclusion criteria of the control group were not having lymphedema in the lower or upper extremities, not having any orthopedic discomfort in the lower extremities, and voluntarily accepting to participate in the study.

The sociodemographic and clinical characteristics of the participants in both groups and the medical histories of the individuals in the study group were recorded. Causes of fear of movement were assessed with the Causes of Fear of Movement questionnaire,¹² fatigue with the Functional Assessment of Chronic Disease Treatment-Fatigue Questionnaire,¹³ and QoL with the Lymphedema Quality of Life Questionnaire.¹⁴

Causes of Fear of Movement Questionnaire consists of 20 questions and evaluates fear of movement under two subheadings, biological and psychological. With this feature, the questionnaire offers the opportunity to determine whether kinesiophobia seen in individuals is due to biological or psychological reasons.¹² The mean of the scores obtained from the biological (individual need for action, energy resources, and individual impulse strength) and psychological (self-acceptance, motor predisposition, mood, and sensitivity to social factors) subheadings gives the total score obtained from the questionnaire. The questionnaire uses 5-point Likert scoring (1 = I totally disagree; 5 = I totally agree). A high score in the questionnaire indicates that the fear of movement is high.¹²

Fatigue was assessed with the Turkish version Functional Evaluation of Chronic Disease Treatment-Fatigue Questionnaire. The questionnaire consists of 13 questions evaluating the level of fatigue during activities of daily living in the last 7 days. The survey score ranges from 0 to 52, with a high score indicating less fatigue.¹³

QoL was assessed with the Lymphedema Quality of Life-Leg Questionnaire. The questionnaire consists of 21 questions and consists of subheadings of function, body image, symptom, and emotional state. It has a score ranging from 1 to 4 for the first 20 questions. The total score for each area is calculated by adding all the scores and dividing by the total number of questions answered. High scores indicate lower QoL. The final question on overall QoL is scored from 0 to 10. Higher scores indicate better QoL.^14,15

Conformity of continuous variables to normal distribution was examined by visual (histogram and probability graphs) and analytical methods (Shapiro–Wilk test). Data were summarized using mean and standard deviation for normally distributed continuous variables, median (minimum–maximum) for non-normally distributed continuous variables and discrete variables, and frequency (%) for categorical variables. The Mann–Whitney U test was used to compare two groups that did not show normal distribution, and the chi-square test was used to compare two qualitative values. p < 0.05 was considered significant. The analysis of the data that did not meet the continuous parametric test prerequisites was evaluated with the Spearman correlation coefficient. Statistical analyzes were performed using 61 programs called IBM SPSS Statistics 24.0 (IBM Corp. Released 2016. IBM SPSS Statistics for Windows, Version 24.0. Armonk, NY: IBM Corp.).

Results

One hundred forty-eight participants (74 patients with LLL and 74 healthy control group) were included in the study. The characteristics of the study groups are shown in Table 1. No significant difference in terms of age and gender, but in body mass index (BMI) was observed between the study groups. 63.5% of the lymphedema patients had primary lymphedema and 36.5% had secondary lymphedema. Most of the patients had lymphedema for 1–5 years. There was a significant difference in age, BMI, and lymphedema duration between patients with primary and secondary lymphedema (p < 0.05) (Table 1).

Table 1.

Comparison of the Demographic Data of the Participants

	Study group (n = 74)		Control group (n = 74)		z, χ²	p
	Mean ± SD	Median (min–max)	Mean ± SD	Median (min–max)	z, χ²	p
Age (years)	48.09 ± 13.53	51 (19–65)	46.08 ± 13.10	46 (20–65)	−1.047	0.295
BMI (kg/cm²)	34.67 ± 9.22	33.43 (19–54.69)	30.84 ± 6.34	31.01 (22.22–50.78)	−2.571	0.010^*

	n	%	n	%
Gender
Woman	60	81.1	51	68.9	2.919	0.088

Man	14	18.9	23	31.1
Etiology
Primary	47	63.5	NA	NA	NA	NA
Secondary	27	36.5	NA	NA	NA	NA
Lymphedema duration
1–5 years	43	58.1	NA	NA	NA	NA
5–10 years	17	23	NA	NA	NA	NA
≥10 years	14	18.9	NA	NA	NA	NA

cm: centimeters; kg: kilograms; χ²: chi-square test; z: Mann–Whitney U test; n: number of participants; Min: minimum, Max: maximum, BMI, body mass index; SD, standard deviation. ^*p < 0.05.

Fear of movement total score and QoL scores was higher in lymphedema group than in the control group. The subparameters of fear of movement (biological and psychological score), and QoL (function, appearance, symptom, and emotional status) scores were also different between the groups (p < 0.05), whereas no difference was found in fatigue scores (Table 2).

Table 2.

Comparison of Fear of Movement, Fatigue, and Quality of Life Between Groups

	Study group (n = 74)		Control group (n = 74)		z, χ²	p
	Mean ± SD	Median (min–max)	Mean ± SD	Median (min–max)	z, χ²	p
Fear of movement total score	2.92 ± 0.78	2.75 (1.33–4.81)	2.32 ± 0.77	2.36 (1–5.86)	−4.426	<0.001^*
Biological score	2.98 ± 0.94	2.95 (1–5)	2.32 ± 1.00	2.27 (1–8.23)	−4.578	<0.001^*
Psychological score	2.85 ± 0.74	2.65 (1.67–4.83)	2.32 ± 0.71	2.33 (1–3.89)	−3.682	<0.001^*
Fatigue score	20.97 ± 11.02	18 (5–40)	19.01 ± 9.82	17 (1–43)	−0.666	0.505
QoL-function	2.37 ± 0.84	2.12 (1–4)	NA	NA	NA	NA
QoL-appearance	2.73 ± 0.92	2.70 (1–4.80)	NA	NA	NA	NA
QoL-symptom	2.35 ± 0.73	2.20 (1–4)	NA	NA	NA	NA
QoL-emotional status	2.11 ± 0.87	2 (1–1.3)	NA	NA	NA	NA
Overall QoL	6.24 ± 1.62	6 (1–10)	6.66 ± 1.74	7 (2–10)	−1.47	0.142

Min: minimum; Max: maximum; n: number of participants; χ²: chi-square test; z: Mann–Whitney U test; QoL, quality of life. ^*p < 0.05.

Forty-seven primary lymphedema and 27 secondary lymphedema patients were included in the study. Total fear of movement score and biological subparameter score of fear of movement were found to be higher in primary lymphedema patients compared with secondary lymphedema. In addition, fatigue and subparameters of QoL scores (appearance and emotional status) were higher in primary lymphedema patients than in patients with secondary lymphedema (p < 0.05) (Table 3).

Table 3.

Comparison of Fear of Movement, Fatigue, and Quality of Life Scores Between Primary and Secondary Lymphedema

	Primary lymphedema (n = 47)		Secondary lymphedema (n = 27)		t, z, χ²	p
	Mean ± SD	Median (min–max)	Mean ± SD	Median (min–max)	t, z, χ²	p
Age (years)	43.63 ± 13.86	45 (19–65)	55.85 ± 8.71	57 (27–65)	13.15	0.001^*
BMI (kg/cm²)	35.02 ± 10.65	32.89 (19–54.69)	34.08 ± 6.09	33.64 (23.88–45.91)	12.897	0.001^*

	n	%	n	%
Gender
Woman	37	78.7	23	85.2	0.467	0.494
Man	10	21.3	4	14.8	0.467	0.494
Lymphedema duration
1–5 years	22	46.8	21	77.8
5–10 years	12	25.5	5	18.5	8.399	0.015^*
≥10 years	13	27.7	1	3.7

	Mean ± SD	Median (min–max)	Mean ± SD	Median (min–max)
Fear of movement total score	3.07 ± 0.84	3.06 (1.14–4.81)	2.64 ± 0.58	2.64 (1.33–3.65)	2.36	0.021^*
Biological score	3.14 ± 0.97	3.04 (1.17–5.00)	2.71 ± 0.82	2.89 (1–3.96)	1.944	0.056
Psychological score	3.01 ± 0.81	2.83 (1.67–4.83)	2.57 ± 0.52	2.33 (1.67–3.47)	−1.996	0.046^*
Fatigue score	23.14 ± 11.16	25 (7–39)	17.18 ± 9.88	13 (5–40)	−2.25	0.024^*
QoL-function	2.41 ± 0.85	2.12 (1–4)	2.30 ± 0.83	2.10 (1–4)	−0.54	0.589
QoL-appearance	2.95 ± 0.86	2.80 (1–4.80)	2.35 ± 0.90	2.42 (1–4)	2.832	0.006^*
QoL-symptom	2.34 ± 0.78	2.20 (1–4)	2.37 ± 0.66	2.20 (1.20–3.40)	−0.147	0.883
QoL-emotional status	2.28 ± 0.88	2.50 (1–3.66)	1.82 ± 0.78	1.80 (1–3.60)	−1.978	0.048^*
Overall QoL	6.14 ± 1.80	6 (1–10)	6.40 ± 1.24	6 (4–9)	−0.682	0.495

cm: centimeters; kg: kilograms; χ²: chi-square test; t: independent samples t-test; z: Mann–Whitney U test; n: number of participants; Min: minimum; Max: maximum; ^*p < 0.05.

There was a correlation between total fear of movement score and age, BMI and fatigue. The biological subparameter is associated with age, BMI, fatigue, and QoL, whereas psychological subparameter was found to be associated only with BMI (p < 0.05) (Table 4).

Table 4.

Related Factor with Primary Lymphedema

	Age		BMI		Fatigue score		Overall QoL
	r	p	r	p	r	P	r	p
Fear of movement total score	0.349	0.016^*	0.528	<0.001^*	0.299	0.041^*	−0.272	0.064
Biological score	0.338	0.020^*	0.461	<0.001^*	0.309	0.035^*	−0.294	0.045^*
Psychological score	0.186	0.209	0.541	<0.001^*	0.250	0.090	−0.223	0.133

r: correlation coefficients, ^*p < 0.05.

Only biological subparameters were found to be associated with fatigue in patients with secondary lymphedema (p < 0.05) (Table 5).

Table 5.

Related Factor with Secondary Lymphedema

	Age		BMI		Fatigue score		Overall QoL
	r	p	r	p	r	P	r	p
Fear of movement total score	0.173	0.388	0.288	0.145	0.324	0.100	−0.289	0.143
Biological score	0.034	0.865	0.257	0.196	0.389	0.045^*	−0.286	0.148
Psychological score	0.331	0.092	0.241	0.226	0.113	0.573	−0.197	0.323

r: correlation coefficients, ^*p < 0.05.

Discussion

The results of this study showed that the fear of movement in lymphedema patients (both biological and psychological origin) was more common than in healthy subjects. The scores of fatigue and pain were similar between the groups. Biological fear of movement was closely associated with the BMI, fatigue, and QoL, whereas psychological fear of movement was not associated with.

Avoiding physical movement is a common condition in patients suffering from chronic fatigue. The effort spent on physical activity can have the effect of triggering or worsening fatigue. Patients avoid any situation involving physical activity to cope with chronic fatigue.¹⁶ The basis of fatigue lies in coping with the disease, that is, tolerating the phenomenon of biological origin. Those who consider their illness as a serious problem and who think that they have no control over this problem show their ability to cope passively with fatigue. In this way, the biological origin triggers the psychological origin fear of movement.^17,18 Our study result partially supports the literature. Patients with lymphedema of the lower extremities may have a fear of movement.

The duration of the disease limits physical activities and decreases their biological ability to act, which result in chronic fatigue. Lymphedema patients have similar fatigue levels compared with healthy people. When compared in terms of biological and psychological causes of fear of movement, lymphedema patients were more affected. In biological origin, it can be thought that increased edema in the deep tissue of the lower extremity and around the joint creates capsular tension and reduces the movement of the tendons with the pressure applied to the joint.¹⁹

There is only one study in the literature indicating that lymphedema had no effect on kinesiophobia, that the increase in BMI caused by lymphedema affects the condition of patients, thus reducing physical function and affecting QoL. However, the biological and psychological basis of the fear was not evaluated in this study.⁶ Lymphedema and BMI are two closely related parameters. While lymphedema causes an increase in BMI in the lower extremities, similarly excessive BMI is one of the predisposing causes of lymphedema²⁰ and weight gain affects patients' QoL.^21,22 According to Jager et al, distorted body image increased the motivation to move away from society and social duties in patients, and decreased physical participation.²³

Chronic edema is a major problem that negatively affects QoL. Decreased function, increased volume in the appearance of the extremity, accompanying symptoms, and the patient's decreased self-esteem prevent the patient from achieving the pre-lymphedema QoL.^24,25 Lymphedema patients' lack of psychosocial well-being and the resources available to healthy people, and the necessity of treatment and care put them at a disadvantage compared with healthy people.²⁶ Many reasons such as body image perception, decreased activity, isolation from society, and fatigue increase kinesiophobia and place it in a vicious circle that reduces the QoL of patients.

The nonhomogenous group patients including primary and secondary lymphedema can be considered as a limitation of the study. But this is the first study evaluating the fear of movement in patients with lymphedema in detailed and which involves the related factors. Another limitation may be the cross-sectional design of the study. The long-term evaluation after the complex decongestive therapy, which comprises the education and treatment of lymphedema, would be more instructive for the therapeutic plan of the health professionals dealing with this population.

Conclusion

In summary, fear of movement is common in patients with LLL and related with biological and psychological factors underlying the fear of movement in patients with primary or secondary lymphedema.

Footnotes

Authors' Contributions

Original draft, review, writing, methodology, data collection, and analysis by C.S.P. Review, editing, writing, and data collection by E.C. Writing, review, and editing by P.B. Review and editing by M.D.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

No funding was received for this article.

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