DOI: 10.1542/peds.2011-2568; originally published online March 19, 2012; 2012;129;e930Pediatrics

SenderGwendolyn P. Quinn, Caprice Knapp, Devin Murphy, Kelly Sawczyn and Leonard

Parents: Pilot Testing an Adapted InstrumentCongruence of Reproductive Concerns Among Adolescents With Cancer and

http://pediatrics.aappublications.org/content/129/4/e930.full.html

located on the World Wide Web at: The online version of this article, along with updated information and services, is

of Pediatrics. All rights reserved. Print ISSN: 0031-4005. Online ISSN: 1098-4275.Boulevard, Elk Grove Village, Illinois, 60007. Copyright © 2012 by the American Academy published, and trademarked by the American Academy of Pediatrics, 141 Northwest Pointpublication, it has been published continuously since 1948. PEDIATRICS is owned, PEDIATRICS is the official journal of the American Academy of Pediatrics. A monthly

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Congruence of Reproductive Concerns AmongAdolescents With Cancer and Parents: Pilot Testingan Adapted Instrument

WHAT’S KNOWN ON THIS SUBJECT: Survival takes precedence foradolescent patients with cancer and their families. Patients maynot discuss their treatments’ potential to damage theirreproductive capacity, which has signi!cant psychological lateeffects in survivorship.

WHAT THIS STUDY ADDS: Strong reproductive concerns ofadolescents with cancer may not be captured on current health-related quality of life instruments and may be neglected byparents’ unawareness. Parent-proxy reports of adolescentreproductive concerns are not suitable for capturing speci!cemotions and feelings.

abstractOBJECTIVE: To identify whether a health-related quality of life (HRQoL)instrument intended to capture reproductive concerns is sensitiveand appropriate for adolescent patients with cancer.

METHODS: Pilot testing was completed by administering a 10-item in-strument designed to identify reproductive concerns of female adoles-cent patients with cancer aged 12–18. Parents were also asked topredict their daughters’ responses. Fourteen patients and parentsparticipated. The main outcome measures were language, relevance,accuracy, sensitivity, and missing content regarding the HRQoL instru-ment. Two pediatric hospitals and 1 local support group for patientsand survivors served as the setting for this study.

RESULTS: The majority of parents provided inaccurate predictions oftheir daughters’ responses regarding their reproductive concerns.Overall, parents underestimated their daughters’ concerns becausethe majority of adolescents reported a strong desire for future par-enthood whereas parents expected their daughters to be satis!edwith survivorship.

CONCLUSIONS: Adolescent patients with cancer have strong reproduc-tive concerns; however, this may not be captured on current HRQoLinstruments and may be further neglected due to parents’ unaware-ness. Discussions should be encouraged with adolescent patientsbefore beginning treatment regarding their concerns and valuesabout parenting in the future and cannot rely on parent-proxyreports. Pediatrics 2012;129:e930–e936

AUTHORS: Gwendolyn P. Quinn, PhD,a,b Caprice Knapp,PhD,c Devin Murphy, MSW,b Kelly Sawczyn, MD,d andLeonard Sender, MDe

aCollege of Medicine, University of South Florida, Tampa, Florida;bHealth Outcomes and Behavior, H. Lee Mof!tt Cancer Center andResearch Institute, Tampa, Florida; cInstitute for Child HealthPolicy, University of Florida, Gainesville, Florida; dAll Children’sHospital, St. Petersburg, Florida; and eChildren’s Hospital ofOrange County Children’s Cancer Institute, Orange, California

KEY WORDSadolescent, cancer, congruence, fertility, reproduction

ABBREVIATIONHRQoL—health-related quality of life

Drs Quinn and Knapp, Ms Murphy, and Drs Sawczyn and Sendersubstantially contributed to the conception, design, acquisitionof data, data analysis, and interpretation of results; drafted thearticle and revised it critically at all stages for importantintellectual content; and approved this !nal version to beuploaded.

www.pediatrics.org/cgi/doi/10.1542/peds.2011-2568

doi:10.1542/peds.2011-2568

Accepted for publication Dec 6, 2011

Address correspondence to Gwendolyn P. Quinn, PhD, 12902Magnolia Dr, MRC CANCONT, Tampa, FL 33612. E-mail: gwen.quinn@mof!tt.org

PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).

Copyright © 2012 by the American Academy of Pediatrics

FINANCIAL DISCLOSURE: The authors have indicated they haveno !nancial relationships relevant to this article to disclose.

FUNDING: Supported by the Oncofertility Consortium, funded bythe National Institutes of Health through the NIH Roadmap forMedical Research, grants UL1DE19587 and UL1DE019587.Fundedby the National Institutes of Health (NIH).

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Advances in technology, pharmaceut-icals, and screening over the past 40yearshavedramatically improved ratesof survival forwhatwas once thought tobe a rarely curable disease: childhoodcancer. Between the years 2003 and2008, more than 36 000 new cases ofchildhood cancerwere reported.1 Thesenew clinical advances are steadily in-creasing rates of successful treatment,and pediatric patients today have an80% chance of survival.2

Survival often takes immediate pre-cedence in the minds of patients andfamilies after a diagnosis. Yet, soonthereafter, they may begin to considerand experience a variety of late effectsfrom the treatment received. Infertilityis a potential late effect from treatmentof cancer. Infertility may be reversibleafter some cancer treatments, althoughsustained infertility develops in 50% to95%of adult cancer survivors.3–5 TheUS-based organizations the American So-ciety of Clinical Oncology and theAmerican Academy of Pediatrics haverecommended that all patients withcancer of childbearing age be informedabout the potential for infertility due tocancer treatments and be referred toa reproductive endocrinologist.6,7

Studies examining patient and survivorperspectives on fertility show evidenceof remorse and regret among thosewho felt uninformed.8,9 However, fewstudies have systematically assessedthe reproductive concerns and prefer-ences of patients with cancer them-selves, and only a few studies havefocused on adolescents.8,10 Adolescentsin particular are an important group tostudy because they represent !4 to 6times the number of childhood patientswith cancer.11

Health-related quality of life (HRQoL)assessment toolsarecommonlyused inthe adolescent cancer population tomeasure physical, psychological, so-cial, and cognitive domains which canpredict and track outcomes in clinical

trials and research and evaluation pur-poses as well as highlight needs fora variety of healthcare services.12 Somestudies have used HRQoLmeasurementswith pediatric populations that aredesigned for and by adults, limiting theaccuracy of the results.13,14 AlthoughHRQoL assessments are intended to becompleted by the patients themselves,there are times, particularly in pedi-atrics, that patients cannot completethese assessments because of illness,age, cognitive impairments, or extremefatigue.15 In these cases parents mayserve as the proxy patient; however,parent reports of their child’s HRQoLshould be noted as secondary infor-mation and not be misconstrued as thepatient’s own words because of thediscrepancies of many parent-proxyreports.12,16

Only considering the parents’ concernsabout the adolescents’ health may leadto underreporting or overreporting ofHRQoL and may result in inef!cientresource use as healthcare workersattempt to meet the needs of the ad-olescent. It was once believed thatparents should be the only reportersof their children’s HRQoL,17 but morerecently, adolescents’ unique healthperceptions are being recognized.16,18

Current HRQoL instruments for bothadult and adolescent patients with can-cer lack comprehensive assessments ofreproductive concerns. Wenzel et al19

developed a stand-alone 14-item Repro-ductive Concerns Scale in 2005 to assessa variety of reproductive concerns ofadult female cancer survivors. The Re-productive Concerns Scale was vali-dated by using adult female healthycontrolswith a high internal consistencyamong survivors (Cronbach’s a coef!-cient = 0.91).19 No parallel measurecurrently exists for adolescent oncologypatients.

To expand on the existing literature, weconducted a study to pilot test a 10-itemreproductive concerns scale adapted

for adolescent patients with cancer.Adolescent patients with cancer andtheir parents were administered theinstrument in separate interviews; inthis article we report only the !ndingson the large amount of incongruentresponses between parents and ado-lescents. On the basis of the existingliterature,16,20–24 it was hypothesizedthat adolescents will have fewer re-productive concerns than their parentsor that adolescents will not view theirconcerns as drastically and negativelyas parents. This hypothesis was sup-ported by the belief that adolescentswould struggle to actualize the long-term effects of potentially losing theability to have biological children,whereas parents have already expe-rienced and been impacted by par-enthood. We also hypothesized thatcongruence between parent and ad-olescent would vary by age. Olderadolescents may be more likely tohave considered parenthood and havea better understanding of reproduction.As a result, older adolescents may tendto share similar reproductive concernswith their parents, thus resulting inhigher congruence as compared withyounger adolescents.

METHODS

Participants

Participants in this study were ado-lescentsaged12 to18andtheirparents.Eligibility criteria included the follow-ing: (1)musthavehadcancerdiagnosis;(2) currently undergoing treatment orhad undergone treatment within thepast 6months of recruitment; (3) abilityto speak and comprehend questions inEnglish; and (4) willingness to provideassent from adolescents and writtenconsent from parents. This was a mul-ticenter study including adolescentswho received treatment at 2 pediatriconcology centers: All Children’sHospitalin St. Petersburg, Florida, and Children’sHospital of Orange County in Orange

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County, California, as well as additionalrecruitment from a nonpro!t organi-zation in Tampa, Florida, providingsupport to adolescent oncology patientsand their families. The University ofSouth Florida and Children’s Hospital ofOrange County Institutional ReviewBoards approved this study.

Survey Instrument

On the basis of a review of the existingliterature, the research team deter-mined that there were no validatedsurvey instruments that captured thereproductive concerns of adolescentswith cancer. Wenzel et al’s19 repro-ductive concerns instrument was de-veloped for adult women with cancer,and it was determined that to admin-ister this instrument to adolescents,adaptations must be made. Preliminaryadaptations were made to the Wenzelet al19 items, resulting in a 10-item in-strument applicable to adolescentsaged 12 to 18 (Fig 1). The adapted re-productive concerns scale assessedadolescents’ concerns with potentialeffects of treatment on fertility, assign-ing blame for potential infertility, andfeelings associated with potential in-fertility. In separate interviews, adoles-cents and their parents were read eachitem andwere then asked to answer theitem and also describe how they felt

about the statement itself. This pro-cess, called cognitive debrie!ng, is akey component to ensuring that futureadaptations were age and cognitivelyappropriate. Cognitive debrie!ng solic-its direct input from participants on theitem content, format, and presentationand the level at which the item orstatement is understood.25,26 Parentswere asked to also predict their child’sresponse to each of the original items(shown in Table 1). The accuracy ofthese predictions is detailed below.

Interview

After informed consent was obtainedfrom both parent and adolescent, in-terviewswereconductedseparately (byDevin Murphy). The ability to conductthe interviews separately is germaneto this study to ensure that parents didnot prompt adolescent answers orprevent adolescents from expressing

their feelings since parental presencemay cause them to feel embarrassedor self-conscious. Each interview wastape recorded and subsequently tran-scribed verbatim. The interviews las-ted between 30 and 40 minutes, withboth adolescents and parents beinggiven an incentive of $25 at the com-pletion of each interview. Interviewswere conducted between July 2009 andNovember 2010.

Analysis

Once all the audiotapes were tran-scribed, data analysis was based onthe constant comparative method andthe grounded theory approach. Ado-lescent and parent interviews wereanalyzed separately, and then familialdyads were analyzed for congruence.Codes were created to categorizeresponses and were then aggregatedinto themes. Similar qualitative themes

FIGURE 1Ten-item reproductive concerns adapted fromWenzel et al19 (adapted assessment).

TABLE 1 Suggested Changes to the Original Items by Respondents and Congruence BetweenParent and Child Responses to the Original Items

Parent Prediction ofChild Response, (%)

ChildResponse, (%)

Do you understand fertility?a 86 100One day I would like to have a baby.b 71 93If I cannot have a baby in the future, I will be sad.b 50 29Disappointeda 7 36Open-endeda 43 29

I feel frustrated that I might not be able to have a baby in thefuture.b

21 7

Sada 29 7Disappointeda 14 50Open-endeda 14 7Othera 14 29

I feel like I have control over my fertility.b 21 29I feel like I can talk to my parents about fertility.b 100 64I have talked to my parents about fertility.a 86 71If I cannot have a baby, I would blame the illness/cancer.b 79 43If I cannot have a baby, I would blame the doctor.b none noneI am satis!ed with the information I received about my futurefertility.b

79 42

Do you want to know the impacts of your treatment on yourfertility?a

71 79

I am worried about having a baby in the future because I mightget cancer again.b

29 57

I am worried about having a baby in the future because my babymight get cancer.b

43 71

Worried baby will have treatment defects?a 4 11Would you consider adoption?a 14 21a Represent participants’ suggested changes to the items.b Represent the original 10 HRQoL items.

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were grouped together,27 and the re-search team identi!ed subcategoriesthat emerged through several roundsof thematic validation.28 Each code wasdichotomized (response yes or no) andinput into SPSS software (SPSS Inc,Chicago, IL) to calculate frequenciesand cross tabulations.

RESULTS

In total, 14 parent-child pairs wereinterviewed (n = 28). In all but 1 casethe mother was the parent who par-ticipated in the study. Mean age of theadolescent was 15.67, whereas meanage of the parent was 42.30. Seventy-one percent (10) of parents were mar-ried, 57% (8) were white, 79% (11) wereChristian, 64% (9) had an associate’sdegree or higher, and 50% (7) hada child with leukemia. Overall, incon-gruence was found among all parent-child pairs (Figs 2 and 3, Table 1).

Sixty-fourpercent (9outof14)ofparentsprovided incongruent predictions onhalf ormoreof the10statements. Table2shows the characteristics of all parents.The largest difference between parentswho were congruent versus incon-gruent was found in education, whereinthe majority of parents (60% [8]) whoweremostly congruent with their child’sresponses had a bachelor’s degree,compared with 22% (3) who held a

bachelor’s degree in the mostly incon-gruent group.

This study was not powered to conductmultivariate analyses; therefore, theassociations between parent and ado-lescent demographic characteristicsand parent incongruence of half ormore responses could not be reliablyestimated. Cross tabulation was usedto examine the interrelation betweenparents who were incongruent on halfor more of the items and speci!c itemresponses.

Half of the parents who said theirdaughter did not want to know the risksto fertility from her cancer treatmentwere also incongruent on 5 or morestatements. Seventy percent of parents(10) who believe that their daughterdoes not worry about having a baby inthe future because she might get can-cer again were also incongruent on 5or more questions. Seventy-!ve per-cent of parents (11) who said theirdaughter does not worry about havinga baby in the future because her babymight get cancer were incongruent onmore than 5 questions. Seventy-!vepercent of parents (11) say they havetalked to their daughter about fertilityand she is satis!ed with the infor-mation, whereas 40% (6) of adoles-cents say they have talked to theirparent and they are satis!ed. Of the

sample, only 2 parents indicated theyhave not talked to their daughter aboutfertility, and these parents were alsoincongruent on 5 or more questions.

One statement (“I’ll be frustrated if Ican’t have a baby”) showed a 64% (9)incongruence between parents’ pre-dictions and adolescents’ responses.Here, approximately 30% (4) of parentssaid that their daughter would say shewould be sad, not frustrated; however,50% (7) of adolescents said they wouldbe disappointed, not frustrated. Themajority of parents who were incon-gruent on this question held an asso-ciate’s degree or higher, were Christian,had a child with leukemia, had a childthat self-reported her health as good,and say they have talked with theirdaughter about fertility.

Two other statements showed a 57% (8)incongruence between parents’ pre-dictions and adolescents’ responses.One statement was “If I cannot havea baby, I would blame my cancer,”wherein the majority of parents aremarried, are less than 50 years old, andhave an associate’s degree or higher. Thesecond statement was “I am worriedabout having a baby in the future be-cause I might get cancer again,”whereinthe majority of parents are divorced orsingle, are less than 50 years old, andhave an associate’s degree or higher.

We accept the null hypothesis thatadolescents have more reproductiveconcerns than their parents. We alsoaccept the null hypothesis that congru-encebetweenparent and adolescent didnot varybyagebecause therewas foundto be no difference between age groups.

DISCUSSION

This study highlights the inaccuraciesin parent-predicted responses of theirdaughters’ reproductive concerns. Twokey issues regarding the reproductiveconcerns of adolescents and theirparents’ perceptions and how this mayimpact HRQoL reporting are identi!ed.

FIGURE 2Comparison of parent-child responses to 10-item HRQoL instrument.

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First, creating, validating, and adminis-tering pediatric instruments must bedonewith pediatric patients foraccuracy.Second, parents often underestimatetheir daughters’ concerns about futurereproduction when impacted by a can-cer diagnosis.

Some HRQoL instruments designed forand by adults are used in the pediatricand adolescent cancer setting.29–31 Thelarge differences between children,adolescents, middle-aged adults, andolder adults likely make the use ofthese instruments inappropriate andunreliable. Furthermore, in 2004 Pick-ard et al32 identi!ed 16 quality of lifeand HRQoL instruments for pediatriconcology. In practice settings, it is notknown how often parent proxies areused for HRQoL assessments of ado-lescent patients with cancer and es-pecially not their reproductive concerns.Some studies exist that examine ado-lescents’ and their parents’ generalfertility concerns and fertility preser-vation options; however, there is alarge heterogeneity of results. For ex-ample, Burns et al33 found that themajority of adolescent patients withcancer and their parents thought aboutparenthood in the future and had astrong desire to know about fertilitypreservation options before beginningtreatment. No statistical differenceswere found between groups.33 Alter-natively, Oosterhuis et al24 assessedagreement within familial dyads re-garding infertility risks of adolescentpatients with cancer. Seven out of 12questionnaire items showed a 10% orlarger difference in responses be-tween parents and adolescent.24 Last,Eiser and Morse34 conducted a meta-analysis and found congruence be-tween parent and child reports onHRQoL physical domains but largeincongruence for parent and childreports on HRQoL emotional and socialdomains.34 However there are occa-sions when parent-proxy reports of

FIGURE 3Additional feedback not included on the HRQoL instrument.

TABLE 2 Characteristics of Parents With High Versus Low Incongruence

Incongruent on 5 or More Predictions Congruent on 5 or More Predictions

Total parents, % 64 (9/14) 36 (5/14)Female, % 78 100RaceWhite, % 67 60Hispanic, % 11 20Other, % 22 20

Age (parent)Mean 6 SD 47.56 6 5.15 47.2 6 5.76Range 42–55 41–53

Age (child)Mean 6 SD, y 15.44 6 1.7 15.80 6 2.59Range, y 12–18 13–18

InsurancePrivate, % 78 80Public, % 23 20

Education$Associate’s degree, % 56 80

Marital statusMarried, % 78 60Single/divorced, % 22 0Widowed, % 0 40

ReligionChristian, % 78 80

Child’s diagnosisLeukemia, % 44 60Hodgkin’s lymphoma, % 33 0Rhabdomyosarcoma, % 11 20Brain tumor, % 0 20

Child on treatment, % 67 80Treatment typeChemotherapy, % 100 100Radiation, % 67 60Surgery, % 11 20

Child-reported healthExcellent or very good, % 33 40Good, % 56 40Fair, % 11 20

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HRQoL domains are required becauseof young age, feeling too ill, knowncognitive impairments, and refusal,among other factors.15 Child self-reportshould be sought whenever possible,and practitioners should documentwhen a parent-proxy response has beenmade. Children as young as 5 have beenshown to reliably report their HRQoL onassessments.35

Another key issue highlighted from theresults is that parents often under-estimated their daughters’ concernsabout future reproduction when im-pacted by a cancer diagnosis. The fewstudies examining attitudes of adoles-cent patients with cancer toward fer-tility support this conclusion. Crawshawand Sloper8 found that the majority ofadolescents surveyed aged 13 to 21 whowere receiving treatment of cancerreported having a strong desire to knowimmediately after diagnosis how theircancer treatment would impact theirfertility. The majority of adolescentswho had a known impairment to theirfertility were most concerned aboutfuture partnering.8 Similar results havealso indicated high informational needsof this population regarding treatment’simpact on fertility.9,24,36

There are various reasons why parentsunderestimated their daughter’s con-cerns about future reproduction. A fo-cus on survival could overshadow thenormative developmental experiencesthat adolescents with cancer still face.Chronically ill adolescents experience

similar desires as their healthy peersand have been shown to deny theircancer diagnosis as an attempt toregain normalcy.37,38 However, this maynot be recognized during a cancer cri-sis. Additionally, as seen in this study,there are discrepancies between parentand child reports on discussions aboutfertility. Many parents indicated theyhave talked to their daughter aboutfertility, whereas a smaller percentageof adolescents said they have spoken totheir parents. This may be due to com-munication patterns regarding sex andreproduction, which may account forthe underestimation. Adolescent femaleshave been found to more frequentlydiscuss physical aspects of puberty suchas the menstrual cycle with their moth-ers, discuss refraining from sexual ac-tivity with their fathers, and discusssexual intercourse with their friends.39

Race can also play a role because His-panic and Asianmothers have been foundto less likely talk with their daughtersabout sex.40 The high reproductive con-cerns of adolescent patients with cancerhighlight the need for these items onHRQoL tools.

This study does have limitations. Thesmall sample size and locations of re-cruitment reduce generalizability. Also,the population was quite homogenousbecause no non–English speakingfamilies were included; the majoritywere white Christians with parentswho held a bachelor’s degree. Only29% (4) of adolescents were in the

younger age range, which may alsoaffect generalizability. The pilot na-ture of this study also requires thatfurther testing be conducted withlarger sample sizes before makingrecommendations. Additionally, fur-ther research is needed to explorethe congruence of parent-proxy andadolescent reproductive concerns,particularly in ethnically, religiously,educationally, and age-diverse pop-ulations.

CONCLUSIONS

The use of this form of cognitive de-brie!ngappearseffectiveanduseful fordeveloping instruments within thispopulation. Adolescent patients withcancer have strong reproductive con-cerns; however, this may not be cap-tured on current HRQoL instrumentsand may be further neglected becauseof parents’ unawareness. Parent-proxyreports of adolescent reproductiveconcerns are not suitable for capturingspeci!c emotions and feelings that areimpacted by normative development,acceptance of a life-threatening illness,and long-term goals. Discussions shouldbe encouraged with adolescent patientsbefore beginning treatment regardingtheir concerns and values about par-enting in the future. Additional discus-sions throughout the course of treatmentand follow-up may be warranted toassess if concerns or values havechanged.

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DOI: 10.1542/peds.2011-2568; originally published online March 19, 2012; 2012;129;e930Pediatrics

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