Dimensions of quality of life and psychosocial variables most salient to colorectal cancer patients

PSYCHO-ONCOLOGY

Psycho-Oncology 15: 20–30 (2006)Published online 31 May 2005 in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/pon.919

DIMENSIONS OF QUALITY OF LIFE ANDPSYCHOSOCIAL VARIABLES MOST SALIENT

TO COLORECTAL CANCER PATIENTS

JEFF DUNNa,*, BRIGID LYNCHb, MACHELLE RINALDISc, KENNETH PAKENHAMc, LYN MCPHERSONb,

NEVILLE OWENd, BARBARA LEGGETTe, BETH NEWMANf and JOANNE AITKENb

aQueensland Cancer Fund, AustraliabViertel Centre for Research in Cancer Control, Queensland Cancer Fund, Australia

cSchool of Psychology, The University of Queensland, AustraliadCancer Prevention Research Center, The University of Queensland, Australia

eDepartment of Gastroenterology, Royal Brisbane and Women’s Hospital, AustraliafSchool of Public Health, Queensland University of Technology, Australia

SUMMARY

Colorectal cancer is one of the most common invasive cancers, and is responsible for considerable physical andpsychosocial morbidity. Understanding the quality of life experienced by colorectal cancer patients is essential forevaluating the full impact of the disease on individuals, their families and their communities. Patient perspective isessential in establishing a proper understanding of the quality of life of colorectal cancer patients. Despite this, fewstudies have employed a qualitative methodology to explore quality of life issues for colorectal cancer patients. Areview of the literature identified only seven qualitative studies pertaining to quality of life issues for colorectalcancer patients, a surprising finding given the prevalence of this cancer. Accordingly, this study sought to build onthe findings of previous qualitative research by providing descriptive data on the quality of life and psychosocialvariables most salient to colorectal cancer patients. Six core themes emerged from interview and focus group data:Satisfaction with diagnosis and treatment; support (including information provision); quality of life; benefits ofdiagnosis; making sense of the cancer experience; and coping strategies. The information derived from this study willhelp inform the development of supportive care services to address the needs of the increasing number of peoplediagnosed with colorectal cancer. Copyright # 2005 John Wiley & Sons, Ltd.

KEY WORDS: quality of life; colorectal cancer; benefit finding; coping

INTRODUCTION

Colorectal cancer is one of the most commoninvasive cancers in Western societies (Boyle andLangman, 2001; Fearon, 2001). The risk ofdeveloping this disease increases progressively withage (Scholefield, 2001; National Health andMedical Research Council, 1999). The risingprevalence of colorectal cancer, due to populationageing and improvements in survival, is likely tobe responsible for increasing physical and psycho-social morbidity (Australian Institute of Health

and Welfare, 2003), although the magnitude ofthis public health burden is unknown (Dunnet al., 2003).

The importance of assessing cancer outcomesnot only in terms of patient survival but also interms of quality of life during and followingtreatment is well established (DeCosse and Cen-nerazzo, 1997; Dunn et al., 2003; Moinpour et al.,2000; Sloan et al., 1998). Quality of life assessmentin oncology can highlight patients’ unmet emo-tional, social and spiritual concerns and it canassist in evaluating the impact of disease onsurvivors. In clinical trial settings, quality of lifeassessment can help to discriminate betweencompeting treatments that may achieve similarbiological outcomes (Dunn et al., 2003).

Received 28 September 2004Copyright # 2005 John Wiley & Sons, Ltd. Accepted 4 January 2005

*Correspondence to: Queensland Cancer Fund, P.O. Box 201,Spring Hill 4004, Australia. E-mail: [email protected]

Quality of life is a complex and subjectiveconcept and, as such, definitions vary. One wellaccepted definition is as a multidimensional con-cept encompassing an individual’s perceived phy-sical, psychosocial and emotional functioning(Bland, 1997; Cella, 1994; Dibble et al., 1998;Dunn et al., 2003; Klemm et al., 2000; Ness et al.,1998). Quality of life also encompasses domainssuch as sexual functioning, spiritual well-beingand vocational or role performance (Dibbleet al., 1998; Ness et al., 1998; Osoba, 1994;Schag et al., 1994).

Despite the subjective nature of quality of life,and the prevalence of colorectal cancer, few studieshave employed a qualitative methodology toexplore the perceptions held by patients followingdiagnosis (Zebrack, 2000). Patient perspective isparamount for establishing a meaningful under-standing of factors that affect the quality of life ofcolorectal cancer patients, as qualitative studiesattempt to achieve a holistic view of what isoccurring, including subjective data (Dootson,1995). While lacking the ability to generalise andpredict, qualitative studies do provide an in-depthunderstanding not possible with quantitative data,which separates most behaviour from its socialand cultural contexts (Mechanic, 1989). Qualita-tive studies provide important information neededto inform the development of interventions toimprove the well-being of the growing populationof colorectal cancer patients and survivors.

A recent review of studies on quality of life andcolorectal cancer (Dunn et al., 2003) examined 41articles, of which only four were qualitative,highlighting the paucity of qualitative research inthis area. Prior to conducting our study, wetherefore updated the earlier literature search inorder to review the qualitative research conductedto date.

LITERATURE REVIEW

Publications from qualitative studies on descri-bing quality of life in colorectal cancer patientpopulations were identified using four electronicdatabases: Medline (1979}02/2004), CINAHL(1982}11/2003), PsychInfo (1975}02/2004), andSociological Abstracts (1963}02/2004). Thesearch strategy identified articles that had‘colorectal cancer’ or ‘colorectal neoplasm’ and‘quality of life’ or ‘cost of illness’ or ‘lifestyle’ or

‘sickness impact’ in the key words or text of thearticle. Papers written in English and publishedbetween 1980 and 2003 were considered.

The literature search identified 367 matchingarticles using the Medline database, 226 articlesusing the CINAHL database, 17 articles usingPsychInfo and none using Sociological Abstracts.The titles and abstracts were reviewed to assess therelevance of the articles. Articles were included forreview if they were qualitative in design andrelated to the quality of life experienced by peoplewith colorectal cancer. Papers solely describingspirituality (one specific component of quality oflife) were excluded. Seven articles were identifiedby the literature search. Refer Table 1.

Findings from the qualitative articles

The findings of the qualitative papers offer someinsights into the experience of colorectal cancerthat are not provided by the predominantlyquantitative studies in this area. O’Connor et al.(1990) highlight the existential concerns of color-ectal cancer patients. This study explored conceptssuch as finding meaning from a colorectal cancerdiagnosis, enhanced appreciation for life andwhat patients have learned from their cancerexperience. These themes receive minimal atten-tion in the overall colorectal cancer/quality oflife research area.

The study by Ness et al. (1998) used focusgroups to identify and describe morbidity asso-ciated with colorectal cancer for the purpose ofdeveloping a utilities assessment instrument. Par-ticipants in this study described their fear of cancerrecurrence, a concept that did not emerge in theprevious review by Dunn et al. (2003) of quality oflife and colorectal cancer literature.

The Northouse et al. (1999) study was the onlyone that presented results from both patientand spouse perspectives. Although the themesaddressed by this study were similar to thosedescribed in the general literature in the area, thereporting of the interaction between patient andspouse during the cancer experience adds anotherdimension to the quality of life of colorectal cancerpatients.

Sahay et al. (2000) presented a patient perspec-tive on the psychosocial impact of colorectalcancer. Most of the results they elicited from theopen-ended questions were similar to the themesidentified by the Dunn et al’s. (2003) review of

QUALITY OF LIFE AND COLORECTAL CANCER 21

Copyright # 2005 John Wiley & Sons, Ltd. Psycho-Oncology 15: 20–30 (2006)

Table

1.Summary

ofqualitativestudiesdescribingexperience

ofcolorectalcancer

Study

Objectives

ofstudy

Sample

Response

rate

Studydesign

Measures

Key

findings

O’Connor

etal.(1990)

Todescribewhatisinvolved

intheprocess

oftheperso-

nalsearchformeaningby

recentlydiagnosedcancer

patients

30breast,lungorcolorectal

cancerpatients

randomly

selected

from

larger

study

N/A

Analysisof

secondary

data

from

descriptive

study

Sem

i-

structured

interview

Six

majorthem

eswereidentified

asim

portantto

cancerpatients:seekinganunderstandingofthe

personalsignificance

ofthediagnosis;lookingatthe

consequencesofthecancerdiagnosis;reviewinglife;

changein

outlooktoward

self,life,others;livingwith

thecancer;andhope.

Faithandsocialsupport

were

foundto

assistpatients

intheirsearchformeaning

Nesset

al.

(1998)

Toidentify

anddescribe

outcomestatesofcolorectal

cancerandthesources

of

morbidityaffectingthese

states

38colorectalcancerpatients

from

theIndianaUniversity

MedicalCentre

43%

Descriptive

Focus

group

Seven

areasofmorbiditysummarised:problemswith

socialinteraction;problemswithcognition;fears

of

cancerrecurrence;pain;fatigue;

changes

inbowel

habits;sexualdysfunction.Morbidityin

patients

attributedmainly

tothetreatm

entthey

received

Northouse

etal.(1999)

Todescribetheconcernsof

patients

andtheirspouses

afteradiagnosisofcolon

cancerandto

identify

ways

ofassistingboth

patientsan

d

spousesin

copingwithillness

30coloncancerpatients

+

theirspouses.Convenience

sample

from

northwest

Ohio

andDetroit,Michigan

Notstated

Descriptive

Sem

i-

structured

interview

Spousesregard

colorectalcancerin

amore

negative

manner

than

patients.Differentchanges

inlifestyle

experiencedbypatients

andspouses,butthey

shared

verysimilargreatestconcerns.Spousestendto

havea

more

favourable

reactionto

colostomythanpatients

Sahayet

al.

(2000)

To

describe

the

patients

perspectiveon

thepsycho-

socialim

pact

ofcolorectal

cancer

20colorectalcancerpatients

recruited

from

agastroin-

testinalfollow-upclinic

in

Ontario,Canada

100%

Descriptive

Telephone

interview,

open-

ended

questions

Patients

weregenerallysatisfied

withtheinform

ation

provided

tothem

,buthadsomeconcernsabout

inform

ationregardinglong-term

man

agem

ent.Fam

ily

andfriendswereastrongsourceofem

otionaland

instrumentalsupport.Majority

ofpatientsfocussed

on

broad

,positivechan

ges

since

diagnosis.Thefocuson

negativeconsequencesofdiagn

osisweremore

specific

Taylor(2001)

Todescribetheexperience

ofbeingdiagnosedwith

colorectalcancer

8new

lydiagnosedcolorec-

talcancerpatients

recruited

from

asurgicalout-patient

department

80%

Descriptive

Sem

i-

structured

interview

Six

them

eswereidentified

asthemain

componentsof

theexperience

ofdiagnosis:makingsense

ofthe

diagnosis;fearingtheworst;redefiningthefuture;

havingto

goonwiththetreatm

ent;managingday-

to-day;feelingonyourown

Ramfeltet

al.

(2002)

Toexplore

theem

otional

andinteractionalperspec-

tives

inthemeaningofill-

nessamongst

agroupof

colorectalcancerpatients

52patients

drawnfrom

two

surgicalunitsattw

ohospi-

talsin

Stockholm

,Sweden

Notstated

Prospective

Open

ended

questions

When

exploringtheconceptoffindingmeaning,tw

o

dim

ensionsem

erged:unified

embodim

ent(grateful-

ness;confidence

inoneselfandothers;looking

forw

ard

toanew

future)anddichotomised

embo-

dim

ent(altered

self-value;

loss

oftemporality;

infringem

entofbodyintegrity)

Perssonand

Hellstrom

(2002)

Todescribepatients’

experiencesduringthe

recoveryfrom

stoma

surgery

Nineostomates(2

ofwhom

hadrectalcancer)

recruited

from

anacute

care

hospital

inGoteborg,Sweden

Notstated

Descriptive

Sem

i-

structured

interview

Seven

them

eswereidentified:alienationfrom

the

body;altered

bodyim

age;

influencesonsexuallife;

uncertainty;influencesonsociallife;influenceson

sportsandleisure

activities;andphysicalproblems.

J. DUNN ET AL.22


colorectal cancer and quality of life literature,however, this study also outlined some of thepositive outcomes of colorectal cancer describedby patients.

Taylor’s (2001) article described the colorectalcancer experience from the newly diagnosedpatients’ perspective. Themes that emerged fromthe interview data included making sense of thediagnosis, redefining the future and feeling ‘onyour own’. This last theme served as the focus ofthe paper’s discussion, due to Taylor’s lack ofreference to this theme in the literature.

Ramfelt et al. (2002) explored colorectal cancerpatients’ perspectives of the meaning of theirillness. The subthemes that emerged fell into oneof two categories: unified and dichotomisedembodiment. Gratefulness, confidence in oneselfand others, and looking forward to the future wereall themes within the unified embodiment dimen-sion. The dichotomised embodiment dimensionthemes were altered self-value, loss of temporality,and infringement of body integrity.

Persson and Hellstrom (2002) interviewed recentostomy patients, two of whom were rectal cancerpatients. Body image emerged as a key concern forthe participants in this study, and the difficultiesadjusting to a ‘new body’ were of great importanceduring the 6–12 weeks following surgery.

This literature review highlights the paucity ofqualitative research and the limited scope of thestudies to date. Only three of the seven studies inthe review described patient perspective on thecolorectal cancer experience as a whole. Whilstthese studies shared some points of agreement (e.g.patients’ concerns about long-term outcomes), noclear or consistent themes have emerged from theliterature to date. Therefore, the aim of this studywas to add to the body of qualitative knowledgeabout colorectal cancer, and to provide descriptivedata on the quality of life and psychosocialvariables most salient to colorectal cancer patients.

STUDY DESIGN AND METHODS

Initial data were collected by in-depth interview,and factors arising from these data were exploredin two focus groups. The use of between-method(or across-method) triangulation, which combinesdifferent methods to illuminate the same phenom-enon, was chosen to ensure maximum opportunityfor the key themes to emerge. Criterion sampling

was used to obtain both the interview and focusgroup participants. Thematic analysis was used toanalyse the data. When using this technique forinterpreting patterns in data, the researcher isinterested in a topic or set of issues and thenapproaches the interviews with these in mind.Themes are then sought as these emerge from thenarrative of the interview (Kelleher, 1993).

The study was approved by the QueenslandUniversity of Technology’s Human ResearchEthics Committee and the Royal Brisbaneand Women’s Hospital Human Research EthicsCommittee.

Recruitment of participants for interviews and focusgroups

Patients were eligible for this study if they hadbeen diagnosed with colorectal cancer within thepast 18 months, were under 80 years of age, spokeEnglish, and had no obvious mental or intellectualimpairment. Samples were obtained using twomethods for this study.

In the first instance, five potential participantswere identified through Queensland Cancer Fundcancer support programs and accommodationcentres. The purpose and nature of the researchwas explained to these patients, and they wereposted an information pack, consent form andletter inviting them to participate in the study. Thefive patients were recruited to the study; four tookpart in in-depth interviews and one participated ina focus group.

Secondly, the medical records of all patientswho had undergone surgical treatment for aninitial occurrence of colorectal cancer at theRoyal Brisbane and Women’s Hospital (RBWH)between 1 November 2000 and 28 February 2002were reviewed and all patients who met the studycriteria were selected. The treating physicians forthese patients were asked if they were prepared fortheir patients to be contacted regarding participa-tion in this study. Consent was granted to contact50 (92%) patients.

An introductory letter about the study, signedby the RBWH Executive Director of MedicalServices, was then posted to these patients. Aninformation sheet further describing the study,plus a ‘consent to contact’ form accompanied theletter, for patients to sign and return if they werehappy to be contacted regarding the study.Patients who returned the ‘consent to contact’



form were telephoned by research staff to discussthe study, and to schedule an interview or focusgroup if willing.

A second letter from the RBWH ExecutiveDirector of Medical Services, along with aninformation sheet and ‘consent to contact’ form,was sent to patients who did not respond to thefirst letter. There was no further follow-up afterthe second letter. Fourteen participants wererecruited through the RBWH; 11 took part in in-depth interviews and four participated in a focusgroup (there was one patient who participated inboth an interview and a focus group).

In-depth interview procedure

The purpose of these in-depth interviews was togain an understanding of what is important toparticipants in terms of their own experiences withcolorectal cancer and the quality of their life.Participants were asked open-ended questionsabout their experiences with colorectal cancerand the support they received. They were alsoasked to give a self-assessment of their quality oflife since their diagnosis of colorectal cancer. Afterfour interviews had been conducted, some struc-tured questions about the pathway to diagnosiswere added to the interview protocol as promptsfor more detailed information.

Two researchers conducted 15 interviews (sixmales, nine females) in total. The researchersutilised open-ended questions and active listeningtechniques to facilitate the exchange of informa-tion and adopted an informal, unstructuredprocess. Interviews were tape-recorded andnotes were taken to facilitate transcription andthematic coding. The tape recordings also allowedthe researchers to compare their interviewtechniques to ensure that a similar style andformat were adopted so that comparable datawere collected.

Focus group procedure

Key psychosocial issues and themes identifiedthrough the in-depth interviews were revisited andexamined during the focus group discussions. Bothfocus groups included a spouse of one of thepatients participating in the study. The perspectiveof the primary support person/carer, in addition tothat of the patient, was considered to be important.

Two focus groups were held, facilitated by theresearchers who had conducted the in-depth inter-views. The first focus group had four participants,comprised of three patients (one male, two female)and one spouse (female). The second focus grouphad three participants, comprised of two patients(both female) and one spouse (male). Both focusgroups ran for approximately 90minutes. Focusgroups were tape-recorded and notes were taken tofacilitate transcription and thematic coding.

ANALYSIS

Open coding initiated the analysis of the interviewtranscripts. This process involves breaking down,examining, comparing, conceptualising and cate-gorising data (Strauss and Corbin, 1990). Inaccordance with thematic analysis methodology,core themes were identified using selective coding:selecting the core category, systematically relatingit to other categories, validating those relation-ships, and filling in categories that need furtherrefinement and development. Five themes emergedfrom the interviews: satisfaction with diagnosisand treatment, support (including informationprovision), quality of life, benefits of diagnosis,and making sense of the cancer experience.Support was further categorised according to thesource of support, and quality of life according tofive domains identified by participants in thisresearch (psychological well-being, physical func-tion, social well-being, work/vocational function,and sexual function).

The focus groups were structured according tothese themes whilst still exploring other factors. Anew theme, ‘coping strategies’, emerged from thefocus group data. Factors that emerged under thisheading included: determination to recover; cop-ing abilities gained from experience with previoustraumatic events; and the ability of patients tocommunicate their feelings about their diagnosisand treatment openly.

RESULTS

When all of the data from the in-depth interviewsand the focus groups were considered, six themesemerged: satisfaction with the process of diagnosisand treatment, support, quality of life, benefits ofdiagnosis, making sense, and coping strategies.

J. DUNN ET AL.24


Satisfaction with the process of diagnosis andtreatment

Participants reported considerable variationexperienced in the pathways to diagnosis. Whilstall participants whose cancer had been detected bya screening test were satisfied with the diagnosticprocess, satisfaction varied for those who had beensymptomatic prior to diagnosis. Reasons fordissatisfaction were most often associated with adiagnostic delay of more than three months,although one participant expressed dissatisfactionbecause she had experienced a number of false-negative tests. Conversely, one of the participantswho said she was satisfied with the diagnosticprocess had experienced a three-month wait for acolonoscopy. Because her cancer was diagnosed ‘intime’, she did not feel upset at this diagnosticdelay. Many public patients, knowing of thewaiting time for tests in the public health system,opted to pay to have colonoscopies and CT scansprivately. Participants who had experienced con-siderable diagnostic delay due to their GP were allaged under 60, indicating that there may bespecific issues for younger people diagnosed withcolorectal cancer. For example:

They put me on two iron tablets a day, and the ironlevels weren’t building up, and I knew myself thatsomething wasn’t right, but the doctors kept assuringme that it was. I’d raised the issue . . . several timeswith both doctors about cancer. ‘Could it be some-thing else? Could it be bowel cancer?’ ‘Oh no, no, no,no.’ ‘Perhaps I should have a colonoscopy?’ ‘Oh no,no, no.’ . . . In the end I had to actually demand it.

Participants were generally satisfied with thetreatment they had received in hospital and atchemotherapy clinics. Only two participants in-dicated that they were unhappy with their treat-ment in hospital. Both had experienced post-surgical complications and an extended recoverytime. One of these participants had been a privatehospital patient, whilst the other had been a publichospital patient.

Support (including information provision)

The sources of support received by participantsduring the cancer experience generally fell intofour categories: medical (including nursing andallied health professionals), family, friends, andcommunity based (including cancer organisationsand church groups).

The majority of participants were happy withthe support they received from their doctors andnurses; however, some did feel that medical staffwere only ‘doing their job’. Two participants feltthat they had received little or no support fromtheir doctors and nursing staff, but the followingquotation is most representative of overall parti-cipant sentiment:

The nurses were exceptionally good, they werefriendly, they were gentle, and they were encouragingme to help out myself.

Access to allied health professionals appeared tobe limited, even for private patients. Participantsindicated that they would have welcomed thepractical and emotional support that allied healthprofessionals could have provided. Participantsnoted that whilst they were in the hospital, aphysiotherapist/nutritionist/social worker had vis-ited them briefly, but that there had been nofollow-up, as the following quote reflects:

A physio did come around once, but they didn’tcome back. They got me up and walking after theoperation, but then there was nothing.

All participants said that they received support ofsome kind from their family, although the level ofsupport did vary. For most, family support was apositive and much appreciated experience. Oneparticipant noted: ‘Family have just been stunning. . . all that marvellous support.’

However, there were participants not completelysatisfied with the support they received. Oneparticipant said that her family had providedpractical support but not emotional support, andanother said that he had not really wanted anysupport from his family. One participant, who hadschool-aged children, stated that her cancer hadadversely affected her family. It had been verydifficult for her children to accept her illness, andat times they had been ‘angry and badly behaved’.However, in the end the whole family did come toterms with the situation.

Support received from friends was more vari-able, with some participants stating that they hadnot wanted any support from their friends. Forthem, this was a private experience and they didnot want others to be involved. Two maleparticipants had ended intimate relationshipswhen they had been told of their diagnosis. Bothmen described how they had ‘pushed away’ theirfemale partners; one said that this was because he



was convinced that he would ‘be dead in twomonths’, whilst the other man said that he ‘did notwant any sympathy’. One female participant hadavoided her friends, because having people tellingher how well she looked reminded her that she hadcancer: ‘When they give me a hug and say ‘how wellyou look!’ . . . I know they mean well but it’s aconstant reminder.’

Other participants had been somewhat disap-pointed in the support they had received fromfriends. One noted that whilst her friends hadvisited her after her surgery, they did not come tosee her during the period when she was undergoingchemotherapy. Most participants who had wantedsupport from their friends, however, had receivedboth practical and emotional support, for exam-ple: ‘Actually the neighbours were very good. Theycooked and used to bring over casseroles and things.’

Some participants mentioned the support they hadreceived from other sources. A number had contactedthe Queensland Cancer Fund and had appreciatedthe information, practical assistance and supportgroup contact they had received. Nutrition Australiawas another community-based organisation that wascontacted by a participant. Another participant feltthat the staff from his business provided him withsubstantial support, whilst another noted that hereceived support from his church:

. . . the ministers and the elders used to come up (tothe hospital) and they’d have bible readings, just pullthe curtain across and have a private bible readingand a prayer. It just gave me spiritual assistance aswell as the physical assistance of the people beingthere.

Participants were almost equally divided into thosewho had wanted to receive information about theirillness and treatment, and those who elected to trusttheir doctors and leave all decisions in their hands.Most who had wanted to receive information hadbeen able to do so, although one participant notedthat much of the written information made avail-able to her was very general and had lacked thelevel of detail she desired. Another participantrelated how distressing she had found misinforma-tion provided by her GP:

When I saw the GP to get the referral, she said ‘nowyou know you’re going to have, in all probability . . .you will have to have a colostomy bag. Forever’ . . .and that was just like being hit by a steam train.When I went to see the surgeon he said ‘Why wouldyou have to have a bag? I’ll just join you up’. So, I

mean, it was dreadful . . . it was almost worse thanhearing the diagnosis about the tumour.

Another difficulty reported by participants wasobtaining information about what they couldexpect in the long term. The most frequent concernexpressed was that they did not receive anyinformation on diet. Most found that they haddifficulty digesting a number of foods after theirtreatment, yet they had not been advised aboutwhat they should and should not be eating, ashighlighted by the following quotation: ‘There wasnot much (information) . . . ‘just go home and eatwhatever you like, just eat your normal diet’.’

Quality of life

The quality of life issues reported by partici-pants fell into five broad categories: psychologicalwell-being, physical function, social well-being,work/vocational function, and sexual function.

Half of all participants reported no change intheir psychological well-being. For the half thatreported change, depression and anxiety about thefuture (particularly about cancer recurrence) weretheir primary concerns. For example: ‘There’s anunderlying fear that it’s going to come back. Andthat must have a negative impact on our lives insome way.’

Physically, about half described little or nochange in level of functioning, although partici-pants did report that the rehabilitation process hadtaken many months. Those with reduced physicalfunction described loss of strength and tiredness asthe main difficulties, as indicated by the followingquote: ‘I’m not doing what I was doing before, I’vebeen told to ease off for six months.’

Some participants described how their social lifehad not been adversely affected by their diagnosisand treatment; however, they did feel less comfor-table engaging in activities where they may not beable to access toilet facilities with ease:

In my situation you can go twice a day, no trouble.So this was just something that I was looking at,keeping an eye on . . . I didn’t want to embarrassmyself or put myself in an awkward situation.

Some participants reported reduced socialisation,primarily due to tiredness, but a couple ofparticipants said that they deliberately avoidedfriends because they were now treated differentlyto what they had been before getting ill.

J. DUNN ET AL.26


Given that most participants had retired prior totheir diagnosis, employment and vocational matterswere not routinely raised. Most of those who hadbeen in employment, however, did return to work,albeit after an extended absence. Only one partici-pant, a woman with advanced colon cancer,reported an inability to fully return to work. Oneretired participant had been very active on a numberof voluntary committees, but has since given upthese roles due to his cancer treatment and recovery.

It was only the younger participants (those under60) who made reference to how their cancer hadaffected their sexual relationships and sexual self-concept. The two younger male participants bothstated that they had ceased sexual activity uponbeing told of their diagnosis. The potential forimpotence had been a serious concern for these menwhile they were undergoing treatment. One of theyounger male participants had a temporary colost-omy bag: he stated that he would not ‘go near awoman’ whilst he had this bag. One of the younger,female participants, who was married, noted thather illness ‘didn’t do much for (our) sex life either’.The younger participants who were not in sexualrelationships worried how their cancer wouldimpact on initiating future sexual relationships.

Benefits of diagnosis

Emerging from the data were three perceivedbenefits. Firstly, that family members were nowmore aware of their risk of developing colorectalcancer, and would therefore have regular screeningcolonoscopies. Participants felt some uneaseknowing that their children were at a higher riskof developing this cancer, but felt better knowingthat, with screening, any cancer should be detectedearly and successfully treated.

Secondly, participants felt that their experiencehad given them a clearer perspective on what isimportant in life, and a profound sense of beingmuch better off than others. A number ofparticipants noted that they had met other cancerpatients, who were worse off, during the course oftheir treatment and had learned a lot from theseindividuals. Small problems and household choresdid not seem as important as they may have in thepast, whereas sunsets, birds singing and thecompany of friends were valued much more.

You become more aware of the blessings. Suddenlyit’s like your antennae are out and you have aheightened awareness.

The third perceived benefit of diagnosis wasparticipants realising how much they are lovedby their family and friends.

I mean, people have come out of the woodwork. Andthe room was just full of cards and flowers andpeople . . . The neighbours across the road, my workpeople, have all been marvellous.

Making sense

Making sense of the cancer experience poseddifficulties for some participants. A few noted thatthey had lived healthy lifestyles and had notabused their bodies}so why did they developcolorectal cancer? They often conceded that theirdiagnosis was ‘just one of those things’. Otherparticipants suggested that their cancer was a‘wake-up call’, a prompt to rethink their attitudeand priorities in life.

And I feel that it was God’s will . . . somehow thisplan for me . . . I feel very strongly that it was caughtin time, I have this really strong feeling that it was.But I’m meant to look at my life now.

Older participants seemed to accept cancer as analmost inevitable part of the ageing process. Asone participant noted, many of his friends had hadone form of cancer or another, so his experiencewas not out of the ordinary.

You don’t feel that you’re a one-off, that you’re theonly one who’s got it.

Coping strategies

A number of focus group participants spoke atlength about how they had coped with theexperience of colorectal cancer. Some participantssaid that they had made themselves determined torecover and that having a positive attitude hadbeen helpful.

Having coped with previous traumatic eventsseemed to have provided strength and copingabilities that participants had drawn on throughtheir experience with cancer. For example, oneparticipant reported that her son had been in anaccident that had left him a paraplegic. This eventhad made her a stronger person for her son, andshe believed that the strength gained at the time ofher son’s accident had helped her to cope with herown diagnosis of colorectal cancer.



Participants also found that talking openlyabout their disease and the treatment they hadundergone had been helpful.

I talk about it quite openly, with everybody. And I’ma very private person. But when the diagnosis hit Ijust found it best to talk about it.

Learning to live with cancer seems to involve bothacceptance and finding the inner resources to cope,and in this study the majority of patients reportedsome level of accomplishment in this regard.

LIMITATIONS

The sample was limited in that all participantswere English-speaking and well enough to parti-cipate. Quality of life is often overestimated instudies such as this due to non-inclusion ofpatients experiencing significant side-effects fromtreatment or those who are terminally ill (Moin-pour et al., 2000). In addition, many patients wererecruited from the same public hospital. Experi-ences with the private verses the public healthsystems may differ. The patients in this study hadbeen diagnosed with colorectal cancer for variouslengths of time up to 18 months; time fromdiagnosis may affect the way in which participantsrecalled their experiences. Also, the focus groupswere small, thus the synergistic effect of the groupsetting, which results in the production of ideasnot uncovered with individuals interviews, mightnot have been seen.

DISCUSSION

The literature review has confirmed a paucity ofqualitative research exploring quality of life andpsychosocial factors pertinent to colorectal cancerpatients. The interviews and focus groups high-lighted six themes relevant to the quality of life ofcolorectal cancer patients and explored patients’existential concerns, confirming findings from thefew other qualitative studies and addressing gapsin knowledge.

Whilst there was considerable variation in thepathways to diagnosis, patients were generallysatisfied with the process, as noted by Sahay et al.(2000). The waiting time for colonoscopies and

other diagnostic tests to be performed in the publichospital system was of concern for some patients.The patients in this study who had experienced thelongest delays in diagnosis had both been agedunder 60 years.

Practical and emotional support from familyand friends was frequently referred to as being themost helpful form of support, as suggested byearlier qualitative studies (Forsberg et al., 1996;Forsberg and Cedermark, 1996). However, alsoevident from the data were instances whereparticipants did not welcome the support of familyor friends. This finding is important because it hasnot emerged as a clear theme in other qualitativestudies in this field, and highlights the potentiallynegative effects of supportive efforts. Anotherquality of life issue to emerge from the dataincluded patients’ sense of reduced functioning ona day-to-day level, that is, becoming reliant onfamily and friends to perform household respon-sibilities such as cooking and gardening. This is aconcept also described by Northouse et al. (1999).

There appeared to be a lack of support fromallied health professionals, and advice from adietitian would have been particularly helpful tothe patients who took part in this research.Participants were generally satisfied with theinformation they received regarding their diagno-sis and treatment. However, patients expresseddissatisfaction with the lack of information pro-vided on long-term management of their illness,confirming the findings of Sahay et al. (2000) andNorthouse et al. (1999).

This study found that the impact on sexualrelationships, also discussed by Ness et al. (1998)and Persson and Hellstrom (2002), was mostsalient for younger patients. Similarly, vocationalissues were most pertinent to younger patients,suggesting that the difficulties and concerns ofyounger patients may differ greatly from those ofolder patients. Further investigation into differ-ences in psychosocial sequelae among younger andolder colorectal cancer patients would be valuable.

Benefit finding is emerging as an importantfactor in major theories of coping with adversity.Research that has examined the adaptationaloutcomes of benefit finding among individualsfacing serious medical problems suggests it is apredictor of emotional well-being and may alsoconfer long-term health benefits (Tennen andAffleck, 2002). The realisation that they are lovedand cared for was considered by participants to bea major benefit of the experience. Participants felt

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some unease knowing that their children were at ahigher risk of developing the same cancer, but feltbetter knowing that, with screening, any cancercould be detected early and treated successfully.The experience of colorectal cancer often resultedin a new outlook on life, supporting the findings ofRamfelt et al. (2002), where restructuring andrevaluing of attitudes and priorities were obviousin many cases. For participants, being able to findbeneficial effects of the diagnosis, a theme alsoidentified by O’Connor et al. (1990) and Taylor(2001), seemed to enable these individuals to makesense of their experience. This study clearlyreinforces the recommendation that health profes-sionals be encouraged to become attentive to theways in which individual patients find benefitsand make sense of their cancer, and assist themin their search for meaning in much the sameway as discussed by Gadow (1980) and Ramfeltet al. (2002).

Hope and spiritual support are themes identifiedby others (O’Connor et al, 1990; Ramfelt et al,2002), and in this study, patients’ belief that theoccurrence of colorectal cancer was ‘God’s plan’represented an inherent belief that they had beenallowed to survive for some purpose. Religion/spirituality were sources of hope to a number ofparticipants. For some, however, it was difficult tomaintain hope with the threat of recurrencelooming. A review of the literature on the fear ofrecurrence experienced by cancer patients by Lee-Jones et al. (1997) highlighted the importance ofinvestigating its relationship with quality of lifeand psychological well-being of the cancer patient.

Inner resources, such as a sense of humour andthe ability to talk openly and express emotions tofamily, friends and concerned strangers, wereconsidered useful coping strategies by patients.This is consistent with the work of Stanton et al.(2000) who found that women’s coping throughemotional expression following treatment forbreast cancer is associated with decreased distress,increased vigour, improved self-perceived healthstatus, and fewer medical appointments formorbidities related to cancer and its treatmentover the course of three months. Several partici-pants found support from others with similarexperiences was beneficial, emphasising the im-portance of support groups.

This study has confirmed the findings fromprevious qualitative research into predictors ofquality of life, and expanded on the themes ofprevious qualitative studies. Clearly emerging

from this research is the importance that personal(age and gender), coping, lifestyle, existential(benefit finding and sense making), social (supportfrom family and friends) and health system (accessto, and satisfaction with) factors have on qualityof life for colorectal cancer patients. An enhancedunderstanding of these factors would assist inthe development of appropriate and amenableinterventions for people diagnosed with colorectalcancer. The need to relate quality of life todisease descriptors and time since diagnosis isapparent, and together with the reasons for, andthe effects of, delay in diagnosis warrant furtherinvestigation.

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Dimensions of quality of life and psychosocial variables most salient to colorectal cancer patients

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