Examining Health-Related Quality of Life (HRQoL), disease-specific quality of life, and coping behaviors in adolescents with renal disease

O R I G I N A L A R T I C L E

Examining Health-Related Quality of Life (HRQoL),disease-specific quality of life, and coping behaviors inadolescents with renal diseaseLynette S. Tay1 PhD, Deborah Wan1 BS, Marion Aw2 MD(UK) & Yap Hui Kim2 MBBS

1 Department of Psychology, Faculty of Arts & Social Sciences, National University of Singapore, Singapore

2 Department of Paediatrics, University Children’s Medical Institute, National University Health System, Singapore

Keywordsadolescent, coping strategies, quality of life,

renal disease

CorrespondenceLynette S. Tay PhD, Department of Psychology,

National University of Singapore, Block AS4

#02-32 9 Arts Link, Singpaore 117570,

Singapore.

Tel: +65 6156 8188

Fax: +65 6516 4435

Email: [email protected]

Received 24 October 2010

Accepted 5 July 2011

DOI:10.1111/j.1758-5872.2011.00154.x

AbstractIntroduction: To examine and compare the Health-Related Quality of Life(HRQoL) and disease-specific HRQoL of pediatric renal dialysis and trans-plant patients based on patients’ perspectives. The coping strategiesemployed by these two groups of patients were also investigated.Methods: Ten adolescents who had undergone kidney transplants (meanage 17.80 � 1.55 years) and 19 adolescents who were receiving dialysistreatments (mean age 17.16 � 2.19 years) participated in the study andwere asked to complete three questionnaires: PedsQL 4.0 Generic CoreModule, PedsQL End-Stage Renal Disease Module, and the KIDCOPE.Results: Compared to pediatric kidney transplant patients, adolescents ondialysis reported more difficulties with school functioning and loweroverall HRQoL. They also reported having more concerns with adhering totreatment and diets, more problems with family and peer interaction, andlower disease-specific HRQoL than transplant patients. Differences in pre-ferred types of coping strategies were found based on gender and type ofmedical treatment.Discussion: Directions for future research to further investigate the vari-ables associated with psychological wellbeing and adaptive coping amongpediatric renal patients were discussed based on study findings. Possiblepsychosocial variables that might have influenced detected differences inpatients’ HRQoL outcomes between the transplant and dialysis groupswere also discussed, with a focus on the types of coping strategiesemployed by the respective patient groups.

Introduction

Health-related quality of life (HRQoL) has been widelyinvestigated as a pivotal outcome measure of chronicillness (Varni et al., 1999). Consideration of HRQoL ofadolescents with chronic kidney diseases has becomemore important with the advent of increasinglysophisticated medical technology and treatments,which have led to higher post-transplantation survivalrates, and more children living with the burden ofchronic illness as they grow. There is a need to under-stand factors that influence HRQoL to provide optimalcare for these children. Nonetheless, studies investi-gating HRQoL of young people who have chronickidney disease are far and few.

HRQoL and disease-specific HRQoL

HRQoL is a multidimensional construct portraying theimpact of a person’s health status or illness on overalllife functioning (Civita et al., 2005). It includes fourdomains of human functions that can be affected byhealth: physical, social, emotional, ad cognitive(Grootenhuis et al., 2007). However, when examiningthe wellbeing of children with a chronic illness, it maynot be sufficient to focus only on these four domainsas they also face illness-specific challenges, forexample adolescents with chronic renal disease (CRD)have to contend with adherence to a strict treatmentand dietary regimen, as well as possible lifelongdependence on medical procedures to manage theirillness (Brownbridge and Fielding, 1991, 1994; Field-

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Asia-Pacific Psychiatry ISSN 1758-5864

204 Asia-Pacific Psychiatry 3 (2011) 204–211 Copyright © 2011 Blackwell Publishing Asia Pty Ltd

ing and Brownbridge, 1999). Pediatric patients withCRD also often experience problems with fatigue,being limited in their daily activities, and worryingabout their health problems and/or changes in theirphysical appearance due to treatment side-effects(Anthony et al., 2009). Children who receive kidneytransplants today are generally no longer required toremain hospitalized for as prolonged periods as in thepast because post-transplant care is increasingly man-ageable through outpatient care. However, they arestill faced with other disease-related issues, such asside-effects of the long-term usage of immunosuppres-sant medication and fears or worries about organrejection. Additionally, following solid organ trans-plant, patients must remain on a lifelong medicationregimen to sustain viability of the transplanted organ.Hence, when investigating adjustment and coping, it isimportant to examine general, as well as disease-specific factors, which encompass the focal issues thatmay serve as stressors for children with CRD. Knowl-edge regarding potential factors that impinge upon thefunctioning and wellbeing of children with renaldisease would facilitate the identification of challengespertinent to this group that warrant evaluation andintervention, as well as guide the development ofappropriate interventions to improve quality of life(Goldstein et al., 2006).

Coping styles

Although adolescents with CRD are generally not atimminent risk of life-threatening medical problems,their illness does require lifelong medical care(Melnyk et al., 2001; O’Brien, 2001). They are oftenfaced with disease-related stressors, in addition totypical stressors associated with adolescence (Eiser,1989). Heightened stress can adversely impact uponfunctioning, particularly when capacities for copingare taxed. Hence, there is a need to examine howchildren with chronic kidney disease cope with stressand how their coping strategies may influence theirquality of life.

Coping has been defined as “constantly changingcognitive and behavioral efforts to manage specificexternal and/or internal demands that are appraisedas taxing or exceeding the resources of the person”(Lazarus and Folkman, 1984, p. 141). Additionally,coping strategies can either be problem-focused oremotion-focused. Problem-focused coping directseffort toward dealing with the stressor while emotion-focused coping refers to actions directed at reducingdistress resulting from the stressor (Folkman andLazarus, 1980; Lazarus and Folkman, 1984). Alterna-

tively, coping strategies can also be classified asapproach or avoidant coping (Roth and Cohen, 1986).Both typologies classify coping strategies based onwhether they are directed towards or away from thestressor (Thompson and Gustafson, 1996).

Different chronic illnesses bring about differentdisease-related stressors, which suggests that variedcoping strategies may be needed to effectively copewith disease-specific stressors (Boekaerts and Röder,1999). Current literature indicates that avoidantbehavior in response to disease-related stressors isrelated to poor psychosocial adjustment (Boekaertsand Röder, 1999). Notably, cognitive avoidance andemotional discharge coping strategies are associatedwith poorer psychosocial outcomes as compared toother approach coping strategies (Moos and Holahan,2007). A study by Ebata and Moos (1991) reportedthat adolescents with rheumatoid arthritis had higherlevels of depression and anxiety if they used moreavoidant coping strategies. Moreover, using avoidantor negative coping strategies, such as blaming others,was also associated with poor treatment adherence(Boekaerts and Röder, 1999). Conversely, the use ofapproach coping strategies, such as positivere-appraisal and seeking social support, have beenassociated with fewer symptoms, less psychologicaldistress, and better wellbeing (Livneh and Antonak,1997; Penley et al., 2002; Horgan and MacLachlan,2004). As little research has been conducted toexamine coping behaviors in young people withkidney disease, this study aims to address that gap inthe literature about coping with pediatric CRD.

HRQoL of pediatric kidney transplant anddialysis patients

Few studies have examined HRQoL within the pedi-atric renal population to investigate differencesbetween children who have received transplantsversus those on dialysis, and conclusions have beencontradictory (Gerson et al., 2005; Goldstein et al.,2006). Several studies found increased psychosocialdifficulties and poorer quality of life among childrenwho were on dialysis as compared to children whohad received kidney transplants. For example, Gold-stein et al. (2006) reported that children on dialysishad poorer HRQoL compared to children with renaltransplants, and they experienced more problemswith physical, school and psychosocial functioning.Similarly, Gerson et al. (2005) found that pediatricCRD patients who had undergone transplant experi-enced less physical discomfort, fewer limitations indaily and physical activities, and were more satisfied

L.S. Tay et al. QoL, coping and pediatric renal disease

Asia-Pacific Psychiatry 3 (2011) 204–211 Copyright © 2011 Blackwell Publishing Asia Pty Ltd 205

with their health status than those receiving dialysis.Additionally, Brownbridge and Fielding (1991)showed that pediatric renal transplant patients hadless functional impairment, social impairment, andfewer difficulties associated with treatment as com-pared to pediatric renal dialysis patients. While theabove studies suggested that pediatric renal transplantpatients tend to experience better quality of life andpsychosocial health, other studies comparing pediatrictransplant and dialysis patient groups have reportedcontradictory findings, indicating that pediatric trans-plant patients may not necessarily be adjusting betterto their illness. For example, McKenna et al. (2006)found that pediatric renal transplant patients reportmore problems with quality of life, school functioning,emotional functioning, and physical functioning thanpediatric dialysis patients. The mixed findingsexpressed in the literature may be due to small samplesizes and studies using different assessment tools tomeasure HRQoL. In an effort to address the QoL con-struct measurement issue, both a generic measure anda disease-specific measure of quality of life factorswere included in this study.

To our knowledge, no study has been conductedregarding the HRQoL of the pediatric renal populationin Asia. As such, the impact of illness on quality of lifeamong pediatric renal transplant and dialysis patientswithin this cultural context is unclear. There arepotential culturally-specific variables that may bemore salient for children in Singapore as compared totheir Western-culture counterparts that make exami-nation of impact of illness on general and specificdomains of HRQoL important. For example, academicperformance and school-related stress have been iden-tified by Singaporean children as primary sources ofdistress (Family & Community Development @ eCiti-zen, 2005). Given the potential impact of chronicillness on school functioning, there may be specificaspects of living with chronic illness that warrantexploration in this cultural context for pediatric renalpatients. Further, it is important to examine how dif-ferent medical treatment procedures (i.e. transplantversus dialysis) may influence HRQoL of adolescentswith CRD to identify specific factors associated withpoor adjustment across patient groups.

The purpose of the present investigation was toexamine differences in general and disease-specificdomains of QoL, as well as types of coping strategiesemployed between adolescents with CRD who havereceived different types of medical treatments. Specifi-cally, this study (i) compared patient-reported levels ofgeneral wellbeing and functioning based on medicaltreatment received (transplant versus dialysis only);

(ii) compared disease-specific quality of life ratingsreported by these two patient groups; (iii) examinedcoping strategies employed by adolescents with CRD.

Methods

Participants

Pediatric CRD patients were recruited from NationalUniversity Hospital (Singapore). Inclusion criteriawere: (a) between 13–20 years of age (b) no knownintellectual functioning deficit, and (c) currentlyreceiving dialysis (i.e. hemodialysis or peritonealdialysis) or already underwent kidney transplant.Thirty-one adolescents met criteria and were invitedto participate in the study. Twenty-nine youths (meanage 17.38 � 1.99 years) and their parents consentedto participate. Participants were grouped according towhether they were on renal dialysis (n = 19; mean age17.16 � 2.19 years) or have received renal transplants(n = 10; mean age 17.80 � 1.55 years). 58.6% of thesample were females (n = 17). Twenty-one (72.4%) ofthe sample had a gross household annual income ofmore than $24,000. The study sample comprised Sin-gaporean Chinese (n = 13), Malays (n = 11), Indians(n = 3), and other ethnicities (n = 2).

Materials

Participants completed three questionnaires: PediatricQuality of Life Inventory (PedsQL) 4.0 Generic CoreScale (Varni et al., 2001), End-Stage Renal Disease(ESRD) Module Version 3.0 (Goldstein et al., 2006,2008), and KIDCOPE (Spirito et al., 1988). Althoughthe chronological age limit for all three measures was18 years, participants from 18 to 20 years of age wereincluded in the study to capture the range of what isconsidered “adolescence” in the local Singaporeancontext. For Singaporean youth, the age of adoles-cence has been defined as ranging from 12 to 25 yearsof age [National Youth Council (NYC), 2006]. Moreo-ver, all participants were still attending school and stilllived with their parents when they were interviewed.

The PedsQL 4.0 Generic Core Scale, which com-prised 23 items, was used for examining HRQoL(Varni et al., 2001). It encompassed four domains ofHRQoL: physical, emotional, social, and school func-tioning. Participants rated items using a five-pointscale (from 0 = never a problem to 4 = almost always)based on “how much of a problem” they had experi-enced across various domains of functioning in thepast month. Items were reverse-scored and all were

QoL, coping and pediatric renal disease L.S. Tay et al.


linearly transformed to a 0–100 scale, with higherscores indicating better HRQoL (Varni et al., 2001).

The 34-item PedsQL ESRD Module (Goldsteinet al., 2006, 2008) was used to examine disease-specific HRQoL, including general fatigue, kidneydisease, treatment adherence, family and peer inter-actions, worry, perceived physical appearance, andcommunication about illness. This scale has beenshown to be reliable and valid for use with renaltransplant and dialysis patients (Goldstein et al., 2006,2008).

The 15-item KIDCOPE (Spirito et al., 1988),which measured behavioral and cognitive copingstrategies, was also administered, tapping into 10 spe-cific coping strategies, such as distraction, social with-drawal, cognitive restructuring and wishful thinking.Participants rated how often they used a strategy todeal with a stressor on a four-point scale, and theyrated perceived efficacy of this strategy on a five-pointscale. Adequate test-retest reliability coefficients werereported from three days to two weeks (Spirito et al.,1988, 1991), and correlations with other coping meas-ures were moderate to high (Spirito et al., 1988).KIDCOPE has also been used to examine how childrencope with disease and procedural-related stress (e.g.Spirito et al., 1995; Tyc et al., 1995; Pretzlik and Sylva,1999).

Procedure

The medical team at the Shaw-NKF Children’s KidneyCentre located within the National University HealthSystem (NUHS) identified patients who met inclusioncriteria for this study. Subsequently, research assist-ants approached patients during their follow-up out-patient clinic appointments to explain the study andseek parental consent and adolescent assent for studyparticipation. The measures were then provided toadolescents and their parents who agreed to partici-pate for completion while waiting for their scheduledappointments. This study was approved by theNational Healthcare Group Domain-Specific ReviewBoards (DSRB).

Statistical analyses

Comparisons of HRQoL (general and disease-specific)and KIDCOPE scores between the renal transplant anddialysis patients were conducted using independentsamples t-test and Mann-Whitney-U test respectively.HRQoL differences were examined based on age,gender and socioeconomic status using independentsamples t-test. Household annual income (i.e. less

than or more than $24,000) was used as an indicatorof SES. For age comparisons, participants were catego-rized into a secondary school group (early tomid-adolescence; ages 13–16 years) versus a post-secondary school (late adolescence/young adult; ages17 years and up) group. Significance level was set atP < 0.05.

Results

General health-related quality of life (HRQoL)

Gender, age and socioeconomic status were not sig-nificantly associated with HRQoL scores as measuredby PedsQL Generic Core for this sample. HRQoL scoresof the dialysis and transplant groups were comparedusing an independent samples t-test (Table 1). Theoverall HRQoL score was higher for the transplantgroup versus the dialysis group (t[27] = 2.19, P = .04),suggesting that pediatric renal transplant patientsreported higher HRQoL than those on dialysis. Meansof the HRQoL subdomains reported by dialysis andtransplant groups were also compared. Ratings ofschool functioning by the transplant group werehigher than those by the dialysis group (t[27] = 2.24,P = .03), indicating that teens on dialysis were report-ing more difficulties related to academic work andschool functioning than adolescents who had receivedtransplants.

Disease-specific quality of life

Age, gender and socioeconomic status were not asso-ciated with differences in disease-specific HRQoLscores as measured by PedsQL ESRD module for thissample. The total disease-specific HRQoL scores werehigher for adolescents who had received kidneytransplants than adolescents who were on dialysis(t[27] = 2.61, P = .02), suggesting that the teens inthe transplant group were experiencing fewer diffi-culties associated with their medical condition thanthose on dialysis (Table 1). Further, between-groupcomparisons of the subscale means were made usingindependent samples t-test (refer to Table 1 formeans and standard deviations). Pediatric kidneytransplant patients reported having fewer problemsassociated with treatment adherence (t[27] = 2.29,P = .03) as compared to their counterparts on dialy-sis. In addition, teens from the transplant groupexpressed having fewer problems with family andpeer interactions than those on dialysis (t[27] = 2.87,P < .01).



Coping strategies

Overall, seeking social support (57.1%) and cognitiverestructuring (48.3%) were the two types of activecoping strategies that were reported as the most fre-quently used by study participants. Both these strate-gies were also rated as effective ways of coping by a highproportion of those who used them (see Table 2). Foravoidant coping strategies, wishful thinking (51.7%)and social withdrawal (31.0%) were most frequentlyused by participants in this study. However, the major-ity of adolescents who used these two avoidant copingstrategies rated the perceived effectiveness of thesetechniques as “not helpful” (refer to Table 2). Small butstatistically significant gender differences were noted:

female participants reported more frequent use ofcoping strategies, such as social withdrawal (U = 47.50,z = -2.30, P = 0.02) and self-criticism (U = 42.00,z = -2.78, P = 0.01) than male participants. In terms ofefficacy, male participants reported the use of wishfulthinking (U = 52.50, z = -2.08, P = 0.04) as more effec-tive than their female counterparts. Differences in ageand socioeconomic status (SES) did not impact onfrequency and perceived efficacy of coping strategies asreported by study participants. However, differences infrequency and efficacy of coping strategies were foundbased on type of medical treatment. Dialysis patients(mean rank = 17.28) reported using distraction as acoping technique more frequently than those who hadreceived transplants. Further, they found distraction to

Table 1. Means and standard deviations of subscales of PedsQL 4.0 Generic Core and End-Stage Renal Disease Module

Dialysis sample (n = 19) Transplant sample (n = 10)

M SD M SD

PedsQL 4.0 Generic Core

Total score* 66.09 15.93 78.05 8.97

Physical health score 68.70 21.94 82.46 13.72

Psychosocial health score 64.87 15.40 75.67 12.15

Physical functioning 68.70 21.94 82.46 13.72

Emotional functioning 64.74 16.62 68.50 20.42

Social functioning 73.68 21.53 84.50 18.48

School functioning* 56.32 23.20 74.00 11.97

Pedsql End-Stage Renal Disease Module

Total score* 56.74 15.46 71.35 11.75

General fatigue 57.89 27.15 76.88 20.63

Kidney disease 62.11 17.51 72.00 19.75

Treatment adherence issues* 55.59 24.46 76.25 20.16

Family and peer interactions** 57.89 24.13 81.67 13.49

Worry 50.95 21.71 66.25 20.92

Perceived physical appearance 57.02 24.57 58.33 21.87

Communication about Illness 61.84 19.09 75.50 19.64

*Difference between means is significant at P < 0.05 level; **Difference between means is significant at P < 0.01 level.

Table 2. Preferred coping strategies and perceived efficacy

KIDCOPE Strategies Frequency† Efficacy‡

Active coping strategies Distraction 27.6% (8/29) 75% (6/8)

Cognitive restructuring 48.3% (14/29) 85.7% (12/14)

Problem solving 31.0% (9/29) 88.9% (8/9)

Emotional regulation 20.7% (6/29) 83.3% (5/6)

Social support 57.1% (16/28) 93.8% (15/16)

Avoidant coping strategies Wishful thinking 51.7% (15/29) 66.7% (10/15)

Resignation 10.3% (3/29) 33.3% (1/3)

Social withdrawal 31.0% (9/29) 33.3% (3/9)

Negative coping strategies Self-criticism 13.8% (4/29) 25% (1/4)

Blame others 6.9% (2/29) 50% (1/2)

†Percentage of participants who stated that they used the coping strategy either “a lot” or “almost all the time”; ‡Percentage of participants who

used the coping strategy “a lot” or “almost all the time” and rated it as effective (“somewhat”, “pretty much” or “very much” helpful).



be a more effective coping strategy than did transplantpatients (mean rank = 9.50; U = 57.00, z = -2.42,P = 0.02).

Discussion

The literature examining psychological wellbeing inchildren and adolescents with CRD is inconclusive andrelatively scarce. While it is widely acknowledged thatassessment of HRQoL in children with chronic illnessis integral to the provision of comprehensive medicalcare, many issues related to its definition, measure-ment and relationship to associated constructswarrant continued investigation (Levi and Drotar,1998). Study findings were comparable to findingsfrom previous studies by Gerson et al. (2005) andGoldstein et al. (2006) comparing HRQoL in transplantand dialysis groups with pediatric renal disease, withthe transplant group reporting higher general qualityof life and fewer concerns about disease-specific diffi-culties. Of note, the pediatric patients in our studywho were on dialysis reported more problems keepingup with school and learning activities, more problemswith following through with medical regimens (e.g.taking medications and fluid intake) and increaseddisruptions to family and peer relationships as a resultof their medical condition and the required treat-ments. Given the frequency and duration of medicalappointments required for patients on dialysis com-pared to those who have received transplants, it ispossible that the ongoing hassles of treatment adher-ence may be impacting upon various facets of theirquality of life and functioning in a relatively moreintrusive manner. The association between copingstrategies employed and child functioning found inthe present study were in line with previous studiesthat examined the coping among children with otherforms of chronic illness, with the use of active copingstrategies (e.g. cognitive restructuring and socialsupport) being reported as the more frequently usedand more effective approach compared to the utiliza-tion and effectiveness of avoidant and negative copingapproaches.

Although findings from the present study servedto provide new information regarding the psychologi-cal wellbeing issues faced by children living with renaldisease, there are several study limitations thatwarrant discussion. Given the small number of chil-dren available for recruitment, the study sample size issmall. Future research with this population wouldbenefit from having a larger sample, and involvingdifferent medical centers or countries in this region to

improve statistical power and generalizability of futurefindings. A further limitation due to the small samplesize is that the potential interactions between HRQoLconstructs, gender and coping approaches were notexamined. While the results yielded by this level ofinvestigation found significant associations among thevariables of interest, further investigation of the inter-action between coping strategies utilized by pediatricrenal patients, treatment adherence and respectiveQoL domains is warranted. With school functioningemerging as a domain of concern for the dialysis groupin this study, it would be informative to furtherexamine associated factors, such as academic stressand school performance, and their relationship withHRQoL and disease-specific quality of life domains inrelation to how pediatric patients cope with renaldisease.

Although results were preliminary given studylimitations, findings suggest possible trends in the uti-lization and effectiveness of coping approaches amongpediatric renal patients that warrant consideration.First, among those who reported using avoidantcoping strategies, a relatively low percentage foundthese strategies to be effective. Second, active copingstrategies were reported as being used by a majority ofthe study sample and high proportions found thesetechniques to be effective. Additionally, females werefound to be more likely to use avoidant strategies thanmales in this study, even though there were no genderdifferences found in QoL ratings, which serves tofurther complicate possible interactions among thevariables of interest. Hence, further investigation ofthe effectiveness of different coping approaches bygender and treatment type would assist in identifyingpossible risk factors (e.g. being female, being on dialy-sis, and reliance on avoidant coping strategies) thatmay affect quality of life for this population.

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Examining Health-Related Quality of Life (HRQoL), disease-specific quality of life, and coping behaviors in adolescents with renal disease