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Transactions of the Royal Society of Tropical Medicine and Hygiene 104 (2010) 219–224
Contents lists available at ScienceDirect
Transactions of the Royal Society ofTropical Medicine and Hygiene
journa l homepage: ht tp : / /www.e lsev ier .com/ locate / t rs tmh
uality of life in filarial lymphoedema patients in Colombo, Sri Lanka
.S. Wijesinghea,∗, A.R. Wickremasingheb
Department of Parasitology, Faculty of Medical Sciences, University of Sri Jayawardenepura, Nugegoda, Sri LankaDepartment of Public Health, Faculty of Medicine, University of Kelaniya, PO Box 6, Thalagolla, Ragama, Sri Lanka
r t i c l e i n f o
rticle history:eceived 28 February 2009eceived in revised form 7 August 2009ccepted 7 August 2009vailable online 30 September 2009
eywords:uality of lifeymphatic filariasisilarial lymphoedema
a b s t r a c t
The quality of life (QOL) was assessed in 141 filarial lymphoedema patients and 128 healthypeople in the Colombo district of Sri Lanka. Information was gathered by administeringthe validated translated version of the WHO 100-item QOL questionnaire (WHOQOL-100),which ascertains an individual’s perception of QOL in the physical, psychological, level ofindependence, environmental and spiritual domains, as well as the general QOL. Healthycontrols had a better QOL in all domains as well as in the overall general QOL, when com-pared to patients with lymphoedema. Several facets such as pain and discomfort, sleep andrest, activities of daily living, dependence on medication and treatment, working capac-ity and social support were significantly affected by the acute adenolymphangitis attack/s
cute adenolymphangitisuestionnaireri Lanka
patients had suffered. The environmental and spiritual domains were significantly affectedby the maximum grade of lymphoedema. The significant difference in the QOL as per-ceived by patients suffering from filarial lymphoedema and apparently healthy individualsreiterates the importance of morbidity control in patients already affected by filarial lym-
Society
phoedema.© 2009 Royal
. Introduction
Lymphatic filariasis (LF) is an important global publicealth and socio-economic problem. The parasite Wuchere-ia bancrofti is the cause of over 90% of human LF casesecorded; Brugia malayi is the other major causative agent.1
t is transmitted to humans by mosquitoes. It is prevalent inoth urban and rural areas, affecting people of all ages andoth sexes and particularly those of low socio-economictatus. 2
LF affects 120 million people in over 80 countries,3
f whom about 14 million suffer from lymphoedema orlephantiasis of the legs.4 Most of those affected liven the humid tropics, in areas such as Africa (south
∗ Corresponding author. Present address: School of Population Health,niversity of Queensland, Level 4, Public Health Building, Herston Road,erston, QLD 4006, Australia. Tel.: +61 0 7 3346 4656;
ax: +61 0 7 3365 5599.E-mail address: [email protected] (R.S. Wijesinghe).
035-9203/$ – see front matter © 2009 Royal Society of Tropical Medicine and Hoi:10.1016/j.trstmh.2009.08.005
of Tropical Medicine and Hygiene. Published by Elsevier Ltd. Allrights reserved.
of the Sahara), Egypt, the Indian subcontinent, South-east Asia, China, Madagascar, Papua New Guinea, thePacific Islands, the Philippines, and Central and SouthAmerica.5
The chronic manifestations of LF are lymphoedema/elephantiasis of the legs and urogenital disease, whichare caused by lymphatic vessel dilatation and dysfunctioninduced by the presence of the adult worm. This predis-poses the part of the body affected to recurrent secondarybacterial infections, which cause acute adenolymphangitis(ADL) attacks. Recurrent ADL attacks are the most commonform of morbidity associated with LF of the extremities,6
as well as being a main risk factor for the progression oflymphoedema and elephantiasis.7,8
In Sri Lanka, more than half the population, approxi-mately 9.8 million people, live in the filariasis endemic
area, encompassing 8 of the 25 districts of the country (T.S.Liyanage, personal communication, 2005).Although LF does not cause immediate mortality, theassociated severe morbidity has resulted in it beingrecognized as the second leading cause of disabil-
ygiene. Published by Elsevier Ltd. All rights reserved.
oyal Soc
220 R.S. Wijesinghe, A.R. Wickremasinghe / Transactions of the Rity worldwide.9 Studies done in Sri Lanka, India andGhana have demonstrated the functional impairment,disability,10,11 economic burden11–13 and psychosocialburden14–16 caused by chronic filarial lymphoedema onaffected individuals, their families and communities.
Studies have been done to ascertain the quality oflife (QOL) of patients suffering from lymphoedema dueto diverse origins, using various instruments such as SF-3617 and the Nottingham Health Profile Part 1 (NHP-1).18
There is growing interest about many disorders leading todisability.19 Only a few studies done in Guyana, India andSri Lanka have assessed the QOL in filarial lymphoedemapatients and all these studies have used the DermatologyLife Quality Index (DLQI).20–23. The DLQI is a tool that hasbeen widely used to assess QOL in various skin diseases.
The WHO 100-item QOL (WHOQOL-100) questionnaireis used to ascertain the physical and psychological aspects,level of independence, environmental and spiritual aspectsas well as the overall general QOL in individuals. This hasbeen used in many diseases, but there is no documentationof this having been used in filarial lymphoedema patients.
We used a validated version of the WHOQOL-100questionnaire,24 to describe and quantify the QOL ofpatients with chronic filarial lymphoedema in the Colombodistrict of Sri Lanka.
2. Materials and methods
2.1. Study area
The Colombo district of the Western Province ofSri Lanka is endemic for bancroftian filariasis with amicrofilaria rate of 0.06 in 2004 (T.S. Liyanage, personalcommunication, 2004). The national Anti-Filariasis Cam-paign has its headquarters in Colombo, the commercialcapital of the country, and conducts three clinics in the dis-trict. We recruited patients attending two of these clinics inWerahera and Dehiwala. The control sample was obtainedfrom residents in the same areas.
2.2. Study design
The study was carried out during September2005–January 2006 in two filariasis clinics in the Colombodistrict. Of the 269 subjects recruited into the study, 141were subjects with lymphoedema attending the filariasisclinics of Dehiwala (n = 112) and Werahera (n = 29), andthe remaining 128 were healthy individuals from thesurrounding areas. The healthy individuals were peopleaccompanying the patients. All subjects were recruitedafter obtaining informed written consent. The patientswere enrolled in an intervention study based on the Com-munity Home-Based Care (CHBC) programme in these twofilariasis clinics19 and were recruited during the follow-upperiod, 1 year after implementing the intervention. TheSinhala (local language) translation of the WHOQOL-100
questionnaire, which had been translated and validatedin Sri Lanka earlier,24 was administered to all subjectsby the Principal Investigator and medical officers trainedin administering this questionnaire. The translation hadbeen reviewed by content experts and pre-tested in theiety of Tropical Medicine and Hygiene 104 (2010) 219–224
earlier study. Information on demographic characteristicsand details regarding lymphoedema and ADL attackswere obtained. Lymphoedema was diagnosed clinically aspersistent oedema of >6 weeks duration. To be includedin the study, patients had to be over 18 years of age,attending the above filariasis clinics and have clinicallydetectable, persistent oedema of >6 weeks duration.Patients were excluded if they had bilateral leg involve-ment without exclusion of other causes of oedema (e.g.cardiac, renal or hepatic causes) or if they were unable tounderstand/answer questions in the questionnaire, e.g.patients with mental health problems. In all patients withbilateral leg involvement, other causes of oedema hadalready been excluded. Controls had to be over 18 yearsof age, have no history of any type of filarial infection inthe past, have no signs of detectable lymphoedema and beable to understand/answer the questions.
An ADL attack was defined as the presence of local signsand symptoms such as pain, tenderness, local swelling andwarmth in the groin, with or without associated constitu-tional symptoms such as fever, nausea or vomiting.25 Thelevel of lymphoedema was graded according to standardcriteria.25,26
• Grade I – Oedema reversible on elevation of limb• Grade II – Oedema not reversible on elevation of limb; no
skin changes• Grade III – Oedema not reversible on elevation of limb;
skin thickened• Grade IV – Oedema not reversible on elevation of
limb; skin thickened with warty/nodular, papillomatousgrowths (elephantiasis).
2.3. WHOQOL-100
This questionnaire gives a QOL profile and has been usedin a wide variety of settings for different disease profiles.It derives 24 facet scores, 6 domain scores and a gen-eral QOL and health perceptions score. The facet scoresdenote the individual’s evaluation of his/her functioningin the particular area addressed by that facet. The domainscores denote an individual’s perception of QOL in each QOLdomain (physical, psychological, level of independence,social, environmental and spiritual). The general QOL andhealth perceptions score is based on four questions per-taining to global QOL and general health.
The 24 different facets are: pain and discomfort (F1),energy and fatigue (F2), sleep and rest (F3), positive feelings(F4), thinking, learning, memory and concentration (F5),self esteem (F6), body image and appearance (F7), negativefeelings (F8), mobility (F9), activities of daily living (F10),dependence on medication or treatment (F11), workingcapacity (F12), personal relationships (F13), social support(F14), sexual activity (F15), physical safety and secu-rity (F16), home environment (F17), financial resources(F18), health and social care: availability and access (F19),
opportunities for acquiring new information and skills(F20), participation in and opportunity for recreation (F21),physical environment (e.g. pollution/ noise) (F22), trans-portation (F23) and spirituality /religion/personal beliefs(F24).oyal Soc
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R.S. Wijesinghe, A.R. Wickremasinghe / Transactions of the R
Scoring was done according to the WHOQOL studyser’s Manual and Interpretation Guide.27 The WHOQOL-00 is scored through straightforward summative scaling,ith items reverse-scored where necessary. Facet scores
re obtained by summing the scores of the four constituenttems of that facet. Several facets contain items that need toe reverse-scored before facet scores are calculated. For the1 positively framed facets, scores are scaled in a positiveirection (i.e. higher scores reflect a higher QOL). For thehree negatively worded facets, scores are scaled in a neg-tive direction (and reverse-scored in calculating domaincores) with higher values representing a lower QOL. Asach facet comprises four items, all facet scores are in theange of 4 to 20, with a possible score range of 16.
Domain scores are obtained by summing scores of theelevant facets and dividing by the number of facets con-ained in the domain. All domain scores are scaled in aositive direction (i.e. higher scores denote higher QOL).herefore, the three negatively worded facets are reverse-cored in calculating domain scores. Like the facet scores,ll domain scores range from 4 to 20.
.4. Data analysis
The data were analysed using SPSS version 8 for Win-ows (SPSS Inc., Chicago, IL, USA). Frequency distributionsere obtained and associations tested using the �2 test andNOVA. The median value for the overall QOL and general
ealth facet of 12.5 was used as the cut-off value to testssociations between the facets and selected variables. Theeans for the domains varied from 13.1 to 14.6 and, hence,he cut-off value for the domains was taken as 15 to testssociations.
able 1istribution of study participants by selected socio-demographic variables
Variable N
Age group (years)≤3535.1–5050.1–65>65
GenderFemale 1Male
Marital statusMarried 1SingleDivorcedWidowed
Educational levelNo schoolingGrades 1–5Grades 6–11‘A’ levelTertiary education
OccupationProfessional, technical and related workers, administrative and
managerial workersClerical and related workers, sales workers, service workersAgricultural, animal husbandry, forestry, fishermen and hunters,
production, transport equipment operators and labourersArmed forces personnel and workers not reporting any occupationStudents and housewives
iety of Tropical Medicine and Hygiene 104 (2010) 219–224 221
3. Results
The majority of cases were over 50 years, female, mar-ried and educated beyond Grade 5 (Table 1). There weresignificant differences between cases and controls in age,gender, educational level and occupation.
In Table 2, only the results of Overall QOL and generalhealth and domains are shown. Results of the individual 24facets are shown in Supplementary Table 1.
In the three facets which were scaled in a nega-tive direction (pain and discomfort, negative feelings anddependence on medication or treatment), the higher thescore, the higher was the discomfort (pain, negative feel-ings and dependence). Therefore, in these facets, higherscores were seen in more patients than controls.
In all other facets and domains, higher scores denote ahigher QOL. In the positively scaled facets, more healthycontrols than patients had higher scores. This trend wassignificant in all facets and domains except the facetsof physical safety and security (F16), home environment(F17), availability and access to health and social care (F19),physical environment (F22) and transportation (F23). In thesocial relationships domain all values were <15.
More patients had significantly lower overall QOL scoresthan controls (Table 3).
The associations between different facets, domains andaspects of ADL attacks and lymphoedema were investi-gated using �2 tests and ANOVA using the same cut-off
values given in Table 2. These associations are shown inSupplementary Table 2.Certain facets were significantly affected by the ADLattack/s patients had suffered (pain and discomfort, sleep
o. (%) cases No. (%) controls �2 P-value
7 (5) 35 (27) 60.9 <0.00138 (27) 63 (49)73 (52) 27 (21)23 (16) 3 (2)
13 (80) 61 (48) 31.0 <0.00128 (20) 67 (52)
25 (89) 103 (81) 5.5 0.14116 (11) 22 (17)
0 1 (1)0 2 (2)
9 (6) 2 (2) 19.0 <0.00128 (20) 12 (9)91 (65) 84 (66)11 (8) 29 (23)
2 (1) 1 (1)
5 (4) 25 (20) 76.6 <0.001
27 (19) 17 (13)14 (10) 57 (45)
18 (13) 7 (6)77 (55) 22 (17)
222 R.S. Wijesinghe, A.R. Wickremasinghe / Transactions of the Royal Society of Tropical Medicine and Hygiene 104 (2010) 219–224
Table 2Distribution of cases and controls by facets and domains
WHOQOL-100 facets and domains No. (%) cases No. (%) controls X2 P-value
Overall QOL and general health<12.5 99 (70) 31 (24) 56.8 <0.001>12.5 42 (30) 97 (76)
DomainPhysical<15 118 (84) 32 (25) 93.7 <0.001>15 23 (16) 96 (75)
Psychological<15 134 (95) 30 (23) 144.5 <0.001>15 7(5) 98 (77)
Level of independence<15 124 (88) 21 (16) 138.1 <0.001>15 17 (12) 107 (84)
Social relationshipsa
<15 82 (100) 99 (100) – –>15 0 0
Environment<15 132 (94) 91 (71) 24.0 <0.001>15 9 (6) 37 (29)
Spiritual<15 122 (87) 41 (32) 83.4 <0.001
.
>15 19 (14)
a Only 181 subjects who were married were questioned on sexual activity
and rest, activities of daily living, dependence on medica-tion or treatment, working capacity and social support).
For purposes of analysis, the number of ADL attacks inthe past year was categorized as <3, 4–10 and >10 attacks.The number of ADL attacks suffered during the past yearhad a significant impact on facets such as negative feel-ings, physical safety and security, and home environment.The total number of ADL attacks suffered during the entireduration of disease had a significant impact on facets suchas energy and fatigue, mobility, activities of daily living,health and social care as well as on overall QOL and generalhealth.
Patients who had suffered >10 attacks in the precedingyear had a significantly lower QOL in the areas of neg-ative feelings and home environment than patients whohad suffered <3 attacks in the same year. These patientsalso had a significantly lower QOL in the area of physi-cal safety and security than patients who had suffered <11
attacks/year.Patients who had suffered >41 attacks during their ill-ness had a significantly lower overall QOL and generalhealth as well as a significantly lower QOL in social care
Table 3Overall QOL and general health scores
Overall QOL andgeneral health score
No. (%) patients No. (%) controls
4–8 32 (23) 12 (9)9–12 67 (48) 19 (15)13–16 38 (27) 52 (41)17–20 4 (3) 45 (35)
�2 = 71.905, P < 0.001.
87 (68)
availability and access when compared to patients who hadsuffered 11–40 attacks during their illness. These patientsalso had a significantly lower QOL in areas of mobility andactivities of daily living than patients who had suffered<41 attacks/year. The maximum grade of lymphoedemasignificantly affected only the environmental and spiritualdomains.
Social support and physical safety and security facetsand the psychological domain were significantly associatedwith the maximum duration of lymphoedema. Patientswho had suffered lymphoedema for >31 years had a signifi-cantly lower QOL in the area of physical safety and security,as compared to patients who had suffered lymphoedemafor <31 years.
Using backward conditional logistic regression analysisto model QOL taking into account socio-demographic fac-tors and disease status, only disease status (i.e. whetherbeing a case or control) was a significant predictor of lowQOL. None of the other variables considered were signifi-cantly predicting QOL (data not shown).
4. Discussion
Our results demonstrate that chronic lymphoedemahas a significant negative impact on the QOL as per-ceived by affected patients in the Colombo district ofSri Lanka. The WHOQOL-100 questionnaire ascertains anindividual’s perception of QOL in the physical, psycholog-
ical, level of independence, environmental and spiritualdomains as well as the general QOL.In our study, higher facet scores denoting a better QOLwere seen in the healthy controls in all domains. Similarly,the overall, general QOL scores were higher in the con-
oyal Soc
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rol group than in patients with lymphoedema. This trendas expected as it was postulated that the chronic lym-hoedema the patients suffered has a definite negative
mpact on their QOL in all aspects questioned. The physical,ocial and psychological disability suffered by this groupf patients has been reported earlier.10 In patients suffer-ng such disability, their perception of the QOL should beower than in a control group. The control group was largelyealthy, although with complaints such as vague aches andains, and varicose veins.
Several facets such as pain and discomfort, sleep andest, activities of daily living, dependence on medicationnd treatment, working capacity and social support wereignificantly affected by the ADL attack/s patients had suf-ered. Acute ADL attacks are incapacitating and can preventormal activities in affected patients.16
In this study, only the environmental and spiritualomains were significantly affected by the maximum gradef lymphoedema. This may be due to the fact that peopleerceive swollen limbs to be a curse of god. A similar trendas reported by Babu et al. (2006) using the DLQI ques-
ionnaire, where the differences in scores across variousrades of lymphoedema were not significant.20 McPher-on (2003) too demonstrated in his study of 11 filarialymphoedema patients that a higher DLQI score (denot-ng a poorer QOL) was not significantly associated withymphoedema grades but was significantly related to therequency of ADL attacks.23
In contrast, a study using a modified DLQI on 91 patientsith lymphoedema in the Colombo and Gampaha dis-
ricts of Sri Lanka, found a positive association with thetage of lymphoedema.21 In that study too, there was aositive, although not significant, association of a higherLQI with the frequency of ADL attacks over the precedingear.
Babu et al. (2006) reported that the mean DLQI scoremong lymphoedema patients was low indicating a betterOL compared with many chronic skin conditions.20 Thisay be due to the fact that the DLQI focuses mainly on skin
ather than on the diseased limb as a whole.21,28
We have reported earlier the efficacy of an interventionrogramme based on the CHBC programme in this group ofatients in the Colombo district,28 with a significant reduc-ion in the number of patients who suffered ADL attacks, asell as a reduction in the mean number and duration ofDL attacks suffered. We also reported that the majority ofatients perceived an improvement in their swollen limbsost-intervention.28
Since we administered the WHOQOL-100 questionnairenly post-intervention, it was not possible to compare theOL before and after intervention.
The choice of healthy controls from among subjectsho accompanied patients may have reduced the actualifferences between the two groups. As the controlsere from the same home environment as patients, the
ong-term consequences of a chronically ill patient under
heir care may have affected their responses, especiallyn the psychological domain leading to an underesti-ation of the actual differences. It is unlikely that therospect of continuation of patients in the programmeould have under- or overestimated the differences as
iety of Tropical Medicine and Hygiene 104 (2010) 219–224 223
the patients were already enrolled in the programmebefore the study commenced and were receiving freetreatment.
Among the controls, there were higher percentagesof males, younger persons, more educated persons andpersons with higher social class occupations than amongthe patients. The differences are primarily due to thepatients being older females who were accompanied bya family member who would have been younger andexposed to a better education. Logistic regression analy-sis was carried out to adjust for these differences. In thismodel, whether being a case or control was the only pre-dictor of QOL after adjusting for all socio-demographicvariables.
QOL is an inclusive concept incorporating all factors thatimpact upon an individual’s life, and good QOL is expe-rienced when the hopes of an individual are matched byexperience.29 Ideally this should be assessed qualitatively.However, due to the availability of a validated tool, it wasdone using this tool, as a qualitative study on a large num-ber of subjects would have required much expertise andwould have been time consuming.
In keeping with the second strategy of the Global Pro-gramme to Eliminate Lymphatic Filariasis, many strategiesto alleviate disability and suffering, including promot-ing foot hygiene have been initiated across endemiccountries.30 In Sri Lanka too, the CHBC programme hasbeen initiated in the endemic areas (T.S. Liyanage, personalcommunication, 2007).
In conclusion, our results show a significant differencein the QOL as perceived by patients suffering from filar-ial lymphoedema and apparently healthy individuals. Thisfinding reiterates the importance of morbidity control inpatients already affected by filarial lymphoedema.
Authors’ contributions: RSW contributed to the con-ception and design of the study, collection, analysis andinterpretation of data and drafting the article; ARW con-tributed to conception and design of the study, analysis andinterpretation of data and revising the manuscript criticallyfor intellectual content. Both authors read and approvedthe final manuscript. RSW is guarantor of the paper.
Acknowledgements: The authors thank Dr T.S. Liyanage,Director, Anti-Filariasis Campaign, Sri Lanka, for grantingpermission to carry out the study, the medical officers whohelped in administering the questionnaire staff of the filar-iasis clinics in Dehiwala and Werahera, the medical officerswho helped in administering the questionnaire and theparticipants of the study.
Funding: None.
Conflicts of interest: None declared.
Ethical approval: Ethical clearance was obtained from theEthical Review Committee of the Faculty of Medical Sci-ences, University of Sri Jayewardenepura, Sri Lanka. All
patients were treated using guidelines of the national filari-asis control programme and necessary referrals done whenindicated. Other unrelated complaints were also treatedand necessary referrals done. Patients were counselledwhere necessary.oyal Soc
224 R.S. Wijesinghe, A.R. Wickremasinghe / Transactions of the RAppendix A. Supplementary data
Supplementary data associated with this articlecan be found, in the online version, at doi:10.1016/j.trstmh.2009.08.005.
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