information needs across the colorectal cancer care continuum: scoping the literature

Information needs across the colorectal cancer carecontinuum: scoping the literatureecc_1340 296..320

C. VAN MOSSEL, ma, phd candidate, research associate, University of Victoria, Victoria, BC, L. LEITZ, mls,librarian, British Columbia Cancer Agency, Vancouver Island Centre, Victoria, BC, S. SCOTT, ma, phd candi-date, research assistant, University of California Davis, c/o British Columbia Cancer Agency, Vancouver IslandCentre, Victoria, BC, H. DAUDT, phd, manager, Clinical Research, British Columbia Cancer Agency, VancouverIsland Centre, Victoria, BC, D. DENNIS, bsc, research intern, British Columbia Cancer Agency, VancouverIsland Centre, Victoria, BC, H. WATSON, bscn, rn, research co-ordinator, Professional Practice Nursing,British Columbia Cancer Agency, Vancouver Island Centre, Victoria, BC, M. ALFORD, phd, rn, provincialprofessional director, Nursing, British Columbia Cancer Agency, Victoria, BC, A. MITCHELL, bsc, radiationtherapy educator, British Columbia Cancer Agency, Vancouver Island Centre, Victoria, BC, N. PAYEUR, msw,professional practice leader, Patient and Family Counselling, British Columbia Cancer Agency, VancouverIsland Centre, Victoria, BC, C. COSBY, msc, rd, regional professional practice leader, Nutrition, BritishColumbia Cancer Agency, Vancouver Island Centre, Victoria, BC, R. LEVI-MILNE, phd, rd, provincial director,clinical operations & practice leader, Nutrition, British Columbia Cancer Agency, Vancouver, BC, &M.E. PURKIS, phd, rn, dean, Faculty of Human and Social Development, University of Victoria, Victoria, BC,Canada

VAN MOSSEL C., LEITZ L., SCOTT S., DAUDT H., DENNIS D., WATSON H., ALFORD M., MITCHELL A.,PAYEUR N., COSBY C., LEVI-MILNE R. & PURKIS M.E. (2012) European Journal of Cancer Care 21, 296–320Information needs across the colorectal cancer care continuum: scoping the literature

Because cancer care requires a multifaceted approach, providing useful and timely information to people withcolorectal cancer may be fragmented and inconsistent. Our interest was in examining what has and has notcaptured the attention of researchers speaking to the information needs of people with colorectal cancer. Wefollowed Arksey and O’Malley’s framework for the methodology of scoping review. Focusing solely oncolorectal cancer, we analysed 239 articles to get a picture of which information needs and sources ofinformation, as well as the timing of providing information, were attended to. Treatment-related informationreceived the most mentions (26%). Healthcare professionals (49%) were mentioned as the most likely sourceof information. Among articles focused on one stage of the care continuum, post-treatment (survivorship)received the most attention (16%). Only 27% of the articles consulted people with colorectal cancer and fewattended to diet/nutrition and bowel management. This study examined the numerical representation of issuesto which researchers attend, not the quality of the mentions. We ponder, however, on the relationship betweenthe in/frequency of mentions and the actual information needs of people with colorectal cancer as well as theavailability, sources and timing of information.

Keywords: colorectal cancer, patient information needs, scoping review.

Correspondence address: Catherine van Mossel, University of Victoria, 1223 Oxford Street, Victoria, BC, Canada V8V 2V6 (e-mail: [email protected]).

Funding: Canadian Institutes of Health Research (CIHR).

Accepted 31 December 2011DOI: 10.1111/j.1365-2354.2012.01340.x

European Journal of Cancer Care, 2012, 21, 296–320

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Feature and review paper

© 2012 Blackwell Publishing Ltd

INTRODUCTION

Around the world, colorectal cancer is the third mostcommon cancer in men and the second most common inwomen (American Cancer Society 2008). According to theInternational Agency for Research on Cancer, colorec-tal cancer is the fourth leading cause of cancer deathsworldwide. There were about 608 700 deaths from col-orectal cancer in the world in 2008, which accounted for8% of all cancer deaths (International Agency for Researchon Cancer 2008). This type of cancer is also known to haveone of the highest cure rates when detected early. Five-year relative survival rates vary widely worldwide. In theUSA, estimated survival rate is 65% (American CancerSociety 2008). In the Canadian context, the estimated5-year relative survival rate is 66% for those aged 15–69years (Canadian Cancer Society’s Steering Committee onCancer Statistics 2011). However, the figures for survivalrates are lower for lower-income countries, where earlydetection occurs less frequently than in more developedcountries (Coleman et al. 2008).

Despite the frequency of its diagnosis and the potentialfor cure, colorectal cancer commands considerably lesspublic – and scholarly – attention in contrast to two otherleading cancers, breast and prostate, particularly beyondthe screening stage. We believe this inattention has led toa lack of information reaching people with colorectalcancer at stages of their cancer trajectory when they mostneed it.

We come to this belief from our diverse experienceswith people with colorectal cancer. We are an inter-professional research team with substantial experienceworking with people with cancer, specifically colorectalcancer. Our team consists of healthcare providers andresearchers from various disciplines such as nursing,nutrition/dietetics, radiation therapy, library and informa-tion science, patient and family counselling, biology andsocial sciences. Four team members are PhD-prepared,two are PhD candidates and three have Master’s degrees.These team members bring the most research experienceto the team. The remaining team members have baccalau-reate degrees and varying degrees of research experience.Their research skills have expanded significantly since theteam began working together in 2008, undertaking severalresearch projects. Noteworthy, however, is that regardlessof our educational or clinical experience, we all have rec-ognised a problem with the amount and timing of infor-mation given to people with colorectal cancer. In thecourse of our work in a cancer care facility and in our pastresearch, we have heard people recount experiences thathighlight their frustrations with the information, or lack

thereof, they receive during the course of receiving care forcolorectal cancer. It is this collective experience thatbrought us together and informs our research interest,namely, to address the apparent inattention to informa-tion needs of people with colorectal cancer. While servicesmay vary from one jurisdiction to another, the need forinformation knows no borders. Given the high rates ofcolorectal cancer around the world, this issue is of inter-national importance if care provided for people withcolorectal cancer is to improve and become more compre-hensive so as to consider the timely provision of relevantinformation as a fundamental component.

Many researchers (Abdel-Misih et al. 2009; Bachet &Rougier 2010; Enriquez-Navascues et al. 2011) recognisethat providing care for people with colorectal cancerrequires the services of multiple healthcare professionalsat distinguishable points in time (e.g. diagnosis, treatment– including surgery, chemotherapy and/or radiotherapy –and life post-treatment, often called survivorship). van derMolen (1999) points out that the information needs ofpatients change as they go through various stages. Becauseof the multifaceted approach to care, potential exists forinformation to be fragmented and inconsistent: whoshould be providing what information and when (Lenger-ich et al. 2007; Sawyer et al. 2008)? Convinced by Ruttenet al. (2005) assertion that ‘understanding cancer patients’information needs is the crucial first step in designinginterventions to meet the needs of cancer patients’, wehave undertaken an examination of how the academicliterature addresses the information needs of people withcolorectal cancer.

Our preliminary review of the literature revealed thatlittle is known about the information needs of people withcolorectal cancer. An initial search using the terms ‘infor-mation needs’, ‘colorectal’ and ‘cancer’ on the PubMeddatabase from 2004 to 2009 resulted in a total of 812 hits,the majority dealing with cancer screening and not withinformation needs. Although information seeking andreceiving has been shown to be an integral part of cancercare (Ream & Richardson 1996; Mossman et al. 1999;Jefford & Tattersall 2002), a disparity exists between therespective perceptions of cancer patients and healthcareprofessionals regarding the type and amount of informa-tion patients want or need (Rodriguez-Bigas et al. 2007).To address this gap and the apparent dearth of literatureavailable regarding the information needs of people withcolorectal cancer, we believed it was important to inves-tigate how the literature addresses the type, timing andsources of information given to and received by peoplewith colorectal cancer. We proposed that a useful tool forthis investigation was a scoping review. This paper reports

Information needs of people with colorectal cancer

© 2012 Blackwell Publishing Ltd 297

on the findings of our scoping review of the literature oninformation needs of people with colorectal cancer.

We drew on Arksey and O’Malley’s (2005) work on thevalue of scoping reviews. Arksey and O’Malley proposefour common reasons for undertaking a scoping review: (1)to examine the extent, range and nature of research activ-ity; (2) to determine the value of undertaking a full system-atic review; (3) to summarise and disseminate researchfindings; and (4) to identify research gaps in the existingliterature. Our work consisted of two of these goals: anexamination of the extent, range and nature of researchthat addresses the information needs of people with col-orectal cancer with a view to identifying gaps in the litera-ture. We were guided by the question: What does theliterature tell us about which aspects of the informationprovided by healthcare professionals and needed by peoplewith colorectal cancer across the cancer care continuumhave been addressed by researchers? In mapping the field ofstudy, we discovered what has captured the attention ofresearchers and, by default, what has not received atten-tion. Identifying these apparent gaps may be necessary forthe development and implementation of communicationand research strategies that will improve the timely provi-sion of information for people with colorectal cancer.

METHOD

We followed closely the methodological framework ofArksey and O’Malley (2005). Our working definition ofcolorectal cancer was cancer of the large intestine orrectum. We defined the information needs of people whohave had colorectal cancer quite broadly: the need forpsychological, medical, social, financial, practical andnutritional information and support; the need of thisinformation for people receiving treatment, people pasttreatment (often called survivors), families and caregivers;as well as the sources of information.

Scoping review sources and search terms

We searched the following electronic databases: OvidMedline, PubMed, Embase, CINAHL, Cochrane and Psy-cInfo. We also searched Google Scholar and conducted ageneral Internet search using Google. In addition, welooked for current and closed clinical trials, practice guide-lines, meeting abstracts and dissertations, and searchedother sources of gray literature using the Grey MattersChecklist created by the Canadian Agency for Drugs andTechnology in Health (2011). Once we completed theseelectronic searches, we conducted a hand search of four keyjournals (Colorectal Disease, Diseases of the Colon and

Rectum, Journal of Cancer Education and Patient Educa-tion & Counseling) and scanned the reference lists fromrelevant articles to identify other papers that may not havebeen found in the initial search. We also searched the SocialScience Citation Index for articles that may have citedsome of the key articles we retrieved.

Our search was very broad in order to be as comprehen-sive as possible because, as Arksey and O’Malley (2005)state, comprehensiveness is ‘the whole point of scopingthe field’ (p. 10). To identify patient information needs, weused terms such as patient education, patient information,patient satisfaction, patient preference, consumer healthinformation, consumer satisfaction, patient satisfaction,patient participation, patient perception, informationseeking, access to information, communication, attitudeto health, awareness, decision making, self-care, uncer-tainty, nutritional support, social support, self-helpgroups, counselling, patient discharge, after care and con-tinuity of patient care. We also included terms such asphysician–patient relations, attitude of health personnel,nurse’s role, pharmacists, nutritionists, librarians, caregiv-ers, spouses, family and friends in order to capture articlesabout the information provided by health professionals orneeded by the families and caregivers of patients. In addi-tion, we included terms that captured the sources of infor-mation patients might use, such as information services,information dissemination, information centres, pam-phlets, handouts, audiovisual aids, teaching materials,Internet, hotlines and computer-assisted instruction. Welimited the search to articles published in English betweenJanuary 1994 and April 2010. We downloaded the articlesto an online research management tool and removed theduplicates (full details of the search strategies used areavailable on request).

Inclusion criteria

As a result of our initial search, we retrieved a total of10 753 articles. We then established inclusion and exclu-sion criteria. The criteria for inclusion were any mention ofthe information needs of people who have or have had adiagnosis of colorectal cancer, the information needs oftheir families and caregivers or the sources of any of thisinformation. We also included articles about the informa-tion provided to people who have/had colorectal cancer ortheir families and caregivers by health professionals. Lit-erature about screening and prevention was excluded, butwe did keep track of the number of articles on these topics.Articles about genetics were excluded, unless they wereabout the information needed by or provided to people whohave/had colorectal cancer. We also excluded articles that

VAN MOSSEL et al.

© 2012 Blackwell Publishing Ltd298

included other types of cancer in addition to colorectalcancer, but did not discuss the needs of people with col-orectal cancer separately from the needs of those with otherkinds of cancer. Papers about risk, mortality, epidemiol-ogy, drugs, cancer incidence, nutritional status, diet thera-pies, wait times, colitis, irritable bowel syndrome, Crohn’sdisease, familial adenomatous polyposis, diverticulitis,inflammatory bowel, or the information or educationalneeds of health professionals were also excluded, as weredescriptions of treatments, book reviews, policy analyses,case histories and test validations.

The application of these criteria to the article abstractsreduced the number of results to 869 articles for possibleinclusion. We then developed a detailed process forscreening the full text of these 869 articles to build in asmuch integrity and validity to our work as possible. Theresearch team divided into six teams of two people each.Those with less research experience were always matchedwith someone more experienced and each were from adifferent discipline. One team consisted of the librarianand research assistant. The librarian, who had years ofexperience, was involved from the beginning and wasresponsible for the literature search, did the initial screen-ing of articles, and collected and read all the abstracts andthe majority of the articles. The research assistant alsoparticipated in the initial screening of articles, read all theabstracts and ultimately read all the included articles. Thelibrarian and research assistant not only had their own setof articles to review but they also frequently acted as athird reviewer when required.

One-sixth of the 869 articles were assigned to each teamto review. Both members of each team reviewed the fulltext of each article independent of one another to deter-mine its eligibility in our study according to the inclusionand exclusion criteria. They then compared their resultswith each other and came to an agreement about whicharticles they recommended to be included and excluded.If they could not reach an agreement, the librarian orresearch assistant acted as a third reviewer. Because oftheir familiarity with all the abstracts and the inclusionand exclusion criteria, they had a broad and deep under-standing of what we were looking for. Ultimately, weagreed that a total of 239 articles (see Table 1) met theinclusion criteria and were included in the study. Figure 1depicts the flow of our review process.

Charting

We drew on Rutten et al. (2005) systematic literaturereview typology chart but made adjustments to it so itwould more accurately capture the information needs of

people with colorectal cancer and the sources of that infor-mation. Our chart had 10 broadly defined categories ofinformation needs with 82 subcategories (see Table 2) andfive broad information source categories with 19 subcat-egories (see Table 3). We also charted the categoriesdepicting background characteristics of the articles (seeTable 4). In each category of both information needs andsources of information, we included a subcategory called‘general [x]’, for example, ‘general printed materials’ tocapture information needs and sources mentioned thatwere too vague in character to warrant inclusion in any ofthe more clearly defined subcategories but were worthy ofinclusion. To capture the timing of when informationmight be provided to people diagnosed with colorectalcancer, we coded each article once as it related to one ofthe following places on the cancer care continuum: diag-nosis, general treatment, pre-surgery, post-surgery, che-motherapy, radiotherapy, post-treatment (survivorship),end of life, multiple stages and unknown (see Table 5).

Once we established our preliminary chart, our nextstep required reading all 239 articles and charting thedetails according to the typology in a spreadsheet. Wereplicated our matching and review process as describedabove but we changed the membership of each team.Again, each team was assigned one-sixth of the totalarticles, different from those of which either read theabstracts. Additionally, in an effort to ensure consistencyin interpretation and validity in our results, the researchassistant read and charted the entire set of 239 articles.Her familiarity and substantial comprehension of all thearticles, the inclusion and exclusion criteria, and thetypology categories enabled her to assist with any dis-agreements and ensure overall consistency. Thus, eacharticle was read and charted three times. The first tworeviewers charted the articles independent of each otherthen compared their results and came to an agreed-uponinterpretation. They then compared their charting withthe charting of the third reviewer. All three discussed anydiscrepancies and agreed upon a final interpretation. Therole of librarian and research assistant as third reviewerensured inter-reviewer reliability throughout the process.

RESULTS

Presentation of results

To evaluate and present our findings, our research teamcollected as many data on as many observable features ofthe articles as possible. Each time a category or subcat-egory was mentioned in an article, we charted it, but onlyonce per article even if mentioned multiple times. Thisprocess produced a number of ‘mentions’. For example,



Tab

le1.

Ch

arti

ng

ofin

clu

ded

arti

cles

Au

thor

and

date

Typ

esof

info

rmat

ion

nee

dsm

enti

oned

Typ

esof

info

rmat

ion

sou

rces

men

tion

edP

atie

nt

inpu

t

Treatmentrelatedinformation(561;26%)

Rehabilitationinformation(0–2yearsposttreatment)(384;18%)

Copinginformation(207;10%)

Interpersonal/socialinformation(203;10%)

Prognosisinformation(196;9%)

Cancer-specificinformation(174;8%)

Surveillance/healthinformation(2+yearsposttreatment)(166;8%)

Bodyimage/sexualityinformation(129;6%)

Medicalsysteminformation(70,3%)

Financial/legalinformation(32;2%)

Healthcareprofessionals(318;49%)

Interpersonal(132;20%)

Printedmaterials(90;14%)

Media(57;9%)

Organisational/scientificresources(51:8%)

Voicesofpeoplewithcolorectalcancer(64;27%)

Add

is(2

003)

••

••

••

Al-

Bah

ran

ian

dP

lusa

(200

4)•

Aro

net

al.

(199

9)•

••

••

••

••

Ash

ley

(200

5)•

••

••

Au

disi

oet

al.

(199

7)•

••

••

Aya

nia

net

al.

(200

5)•

••

••

••

••

•B

aile

yet

al.

(200

4)•

••

•B

ain

etal

.(2

002)

••

••

••

••

Bar

avel

liet

al.

(200

9)•

••

••

••

••

••

••

Bar

sevi

cket

al.

(199

5)•

••

••

••

•B

eave

ran

dB

ooth

(200

7)•

••

••

••

Bea

ver

etal

.(2

005)

••

••

••

••

•B

eave

ret

al.

(200

7)•

••

••

••

Bea

ver

etal

.(2

009)

••

••

Bea

ver

etal

.(2

010)

••

••

••

••

••

Bla

ck(2

004)

••

••

••

••

••

Bla

ckan

dH

yde

(200

2)•

••

••

••

•B

lack

and

Hyd

e(2

004)

••

••

•B

osse

ma

etal

.(2

008)

••

Bou

dion

iet

al.

(200

1)•

••

••

••

••

•B

rou

ghto

net

al.

(199

5)•

••

••

Bro

ugh

ton

etal

.(2

004)

••

••

••

••

••

Bru

ner

and

Cal

van

o(2

007)

••

••

••

•B

ulm

an(2

001)

••

••

Bu

sby

and

En

ston

(200

3)•

••

•B

uto

wet

al.

(200

6)•

••

••

••

•C

affo

etal

.(2

002)

••

••

••

Cam

ille

ri-B

ren

nan

and

Stee

le(2

001)

••

••

••

••

••

Cam

pbel

lan

dB

orw

ell

(199

9)•

••

••

••

Cam

pbel

lan

dL

un

n(1

999)

••

•C

ampo

Cas

cón

etal

.(2

003)

••

••

••

••

••

Can

cer

Inst

itu

teof

New

Jers

eyat

UM

DN

J–

Rob

ert

Woo

dJo

hn

son

Med

ical

Sch

ool

(199

8)

••

••

Car

dell

aet

al.

(200

8)•

••

••

••

Car

ney

etal

.(2

001)

••

•C

arn

eyet

al.

(200

6)•

••

••

••

••

••

••

Ch

audh

riet

al.

(200

5)•

••

••

•C

heu

ng

etal

.(2

001)

••

••

••

Ch

eun

get

al.

(200

3)•

••

••

•C

olor

ecta

lca

nce

rtr

eatm

ent

guid

elin

esfo

rpa

tien

tsav

aila

ble

(200

0)

••

••

••

Col

wel

lan

dG

ordo

n(2

009)

••

••

••

Com

b(2

003)

••

••

••

••

•C

otri

man

dP

erei

ra(2

008)

••

••

••

••

Cou

rney

aet

al.

(199

9)•

••

••

Cou

rney

aet

al.

(200

0)•

Cou

rney

aet

al.

(200

5)•

•C

ron

in(2

005)

••

••

••

•C

um

boet

al.

(200

2)•

••

••

••

•

VAN MOSSEL et al.


Tab

le1.

Con

tin

ued

Au

thor

and

date

Typ

esof

info

rmat

ion

nee

dsm

enti

oned

Typ

esof

info

rmat

ion

sou

rces

men

tion

edP

atie

nt

inpu

t














Media(57;9%)



Da

Silv

aet

al.

(200

8)•

••

••

•D

avie

set

al.

(200

7)•

••

••

••

••

Dea

nan

dG

oodf

ello

w(2

007)

••

•D

eCos

sean

dC

enn

eraz

zo(1

997)

••

••

••

••

•D

enli

nge

ran

dB

arse

vick

(200

9)•

••

••

••

••

Dep

artm

ent

ofH

ealt

h(U

K)

(199

8a)

••

••

Dep

artm

ent

ofH

ealt

h(U

K)

(199

8b)

•D

eSn

ooan

dFa

ith

full

(200

6)•

••

••

•D

iFa

bio

etal

.(2

008)

••

••

••

••

•D

inti

nja

na

etal

.(2

008)

••

•D

onov

anet

al.

(201

0)•

••

••

•E

akin

and

Stry

cker

(200

1)•

••

••

Ear

lean

dN

evil

le(2

004)

••

••

Elk

inet

al.

(200

6)•

••

•E

lkin

etal

.(2

007)

••

••

••

•E

sple

net

al.

(200

3)•

•Fa

llow

fiel

dan

dC

lark

(199

4)•

••

••

••

•Fa

ul

etal

.(2

010)

••

Fern

sler

etal

.(1

999)

••

Fitz

gera

ld-S

mit

het

al.

(200

3)•

••

••

••

•Fl

oru

ta(2

001)

••

••

•Fo

rdet

al.

(200

7)•

••

••

••

Fox

Ch

ase

Can

cer

Cen

ter(

2000

)•

•G

allo

way

and

Gra

ydon

(199

6)•

••

••

••

•G

arce

aet

al.

(200

5)•

••

Ger

lach

etal

.(1

997a

)•

••

Gol

dzw

eig

etal

.(2

009a

)•

••

••

Gol

dzw

eig

etal

.(2

009b

)•

••

Gol

dzw

eig

etal

.(2

010)

••

••

•G

oodm

an(2

005)

••

•G

oodm

an(2

008)

••

••

Gra

yet

al.

(200

9)•

••

••

•G

riffi

n-S

obel

(200

6)•

••

••

••

••

••

•G

ritz

etal

.(1

999)

••

•H

aide

tet

al.

(199

8)•

••

Han

ks

etal

.(2

008)

••

••

••

••

Har

riso

net

al.

(200

7)•

••

Har

riso

net

al.

(200

9)•

••

Haw

kes

etal

.(2

008)

••

••

Haw

kes

etal

.(2

009a

)•

••

••

Haw

kes

etal

.(2

009b

)•

••

••

Hei

slei

nan

dB

onan

no

(200

9)•

••

Hen

dren

etal

.(2

005)

••

••

•H

eras

etal

.(2

004)

••

••

••

Her

man

net

al.

(200

5)•

••

•H

ouet

al.

(200

9)•

••

••

••

Hou

ldin

and

Lew

is(2

006)

••

••

••

••

••

••

Hu

mpe

let

al.

(200

7)•

••

•H

un

ter

(200

4)•

••

•Ja

cobs

enet

al.

(200

9)•

••

•Je

ffor

det

al.

(200

5)•

••

••

Jon

eset

al.

(200

1)•

•



Tab

le1.

Con

tin

ued

Au

thor

and

date

Typ

esof

info

rmat

ion

nee

dsm

enti

oned

Typ

esof

info

rmat

ion

sou

rces

men

tion

edP

atie

nt

inpu

t














Media(57;9%)



Kar

agia

nn

iset

al.

(200

6)•

••

•K

elle

ret

al.

(200

8)•

••

Ker

ret

al.

(200

3)•

••

••

••

••

••

Kid

det

al.

(200

8)•

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••

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get

al.

(200

9)•

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••

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mm

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.(1

998)

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lem

met

al.

(200

0)•

••

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.(1

999)

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ish

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.(2

009)

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(200

2)•

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.(2

009)

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(200

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(200

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(200

7)•

••

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ghl

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.(2

007)

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(199

8)•

••

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(200

5)•

••

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ove

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.(2

005)

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e(2

006)

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007)

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(200

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(200

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Can

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ter

(200

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.(2

007)

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2)•

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.(2

005)

••

••

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all

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.(2

006)

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ath

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(200

7)•

••

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(200

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ris

(199

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.(2

009)

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.(2

003)

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••

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tal

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.(2

004)

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007)

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(200

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(200

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(200

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Nat

ion

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rgic

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van

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owel

Pro

ject

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)(2

000)

••

VAN MOSSEL et al.


Tab

le1.

Con

tin

ued

Au

thor

and

date

Typ

esof

info

rmat

ion

nee

dsm

enti

oned

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esof

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rces

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tion

edP

atie

nt

inpu

t














Media(57;9%)



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ion

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(200

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ty(2

000)

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010)

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riad

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an(2

003)

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sson

etal

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005)

••

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ters

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.(2

003)

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(200

5)•

••

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.(2

000)

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felt

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.(2

005)

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009)

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••



Tab

le1.

Con

tin

ued

Au

thor

and

date

Typ

esof

info

rmat

ion

nee

dsm

enti

oned

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esof

info

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ion

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tion

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t














Media(57;9%)



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al.

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lor

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lor

(200

8b)

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r(2

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)•

••

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aset

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nan

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oth

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Med

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der

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en(2

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non

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999)

••

••

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ver

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007)

••

••

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ler

(200

9)•

••

••

••

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tern

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lth

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Soci

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are

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st(U

K)

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8)•

••

••

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ilk

esan

dH

arts

hor

n(2

009)

••

••

••

Wil

kin

son

and

Sloa

n(2

009)

••

••

••

••

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ill

(200

2)•

••

••

••

••

••

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ilso

n(2

005)

••

••

••

Woo

dan

dP

rove

nza

no

(200

8)•

••

••

Woo

dan

dSa

ude

r(2

009)

••

••

••

Wor

ster

and

Hol

mes

(200

8)•

••

••

••

••

Wor

ster

and

Hol

mes

(200

9)•

••

••

••

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righ

tan

dM

yin

t(2

003)

••

••

••

Wri

ght

etal

.(2

006)

••

••

••

••

••

Xu

(200

6)•

••

••

•Y

oun

get

al.

(201

0)•

••

••

••

••

••

You

ng

(200

0)•

••

••

••

•

VAN MOSSEL et al.


stoma care was mentioned 12 times, that is, in 12 articles.We cannot, however, speak to the intent of the mention,for example, whether stoma care was mentioned as anunmet or a met need. As a result, our charting does notreveal the qualitative nature of information needs orsources, only that the authors referenced them.

Because most articles included multiple references todifferent types of information needs and sources, theoverall total of each category far exceeded the total numberof papers. Thus, charting the 239 articles revealed 2122mentions of information needs and 648 mentions of infor-mation sources. We present the data in both hard numbersand percentages. Percentages express the percentage ofmentions of a particular category in relation to the totalnumber of mentions of all the categories mentioned in theentire set of literature. Likewise, percentages of subcatego-ries are a comparison of one subcategory against all other

subcategories under the given category. For example, the196 mentions of the prognosis category are expressed as apercentage of the 2122 total information need mentions(n = 196:2122, 9%) whereas the 13 mentions of the progno-sis subcategory chance of cure are expressed as a percentageof the 196 mentions of the prognosis category (n = 13:196,7%). Table 2 presents these findings.

Results

General characteristics of the articles provide a backdropfor the findings specific to our research inquiry. Table 4shows the general characteristics we noted: types ofarticles, data collection method, research study design,field or discipline of the authors, geographical location ofthe work and publication date. The articles eligible forinclusion in this scoping review spanned from the year

Figure 1. Overall flow of scoping litera-ture search and selection of articles to becharted.

Search of electronic databases

General Internet search

Search of the gray literature

Hand search of reference lists and four key journals

14 729 search items returned

Application of inclusion/exclusion criteria to 869 full-text articles Six teams, each with two people, reviewed one-sixth of the articles An additional reviewer read all articles and acted as third reviewer when necessary

Charting of 239 full-text articles Six teams, each of two people, charted one-sixth of articles according to the typology An additional reviewer charted all articles and acted as third reviewer when necessary

9884 abstracts excluded after application of inclusion/exclusion

criteria

630 full-text articles excluded after application

of inclusion/exclusion criteria

3976 duplicates excluded

Search of clinical trials and abstracts

Application of inclusion/exclusion criteria to 10 753 abstracts Six teams, each with two people, reviewed one-sixth of the abstracts An additional reviewer read all abstracts and acted as third reviewer when necessary



Table 2. Types of information needs mentioned in reviewed articles (n = 239 articles, 2122 mentions of needs)

Category (n; % oftotal mentions) Subcategory

Mentionsper category

n %

Treatment-relatedinformation (561; 26%)

Side effects of treatment/risks and benefits of treatment 87 16Available treatments/treatment options 53 9Surgery 50 9Chemotherapy 49 9Treatment plan, treatment description or logistical information 36 6Reducing side effects of treatment 34 6Nutrition during treatment 27 5Tests and procedures involved in treatment 24 4Radiation therapy 24 4Alternative or complimentary treatments 24 4Medications 24 4How treatment works 20 4Physical limitations during treatment 16 3Treatment success 15 3Clinical trials 15 3Physical activity during treatment 15 3Where to get information about treatment 9 2Purpose of treatment 8 1Other patients’ experiences or choices about treatment 8 1General treatment-related information 8 1Progress during treatment 6 1Referrals for treatment 5 <1Effects of missing treatment 4 <1

Rehabilitation information(0–2 years post treatment)(384; 18%)

Stoma care 65 17Home care issues during recovery 50 13Nutrition 50 13Immediate post-treatment follow-up care 47 12Physical activity during rehabilitation 38 10Self-care issues during recovery 28 7Long-term side effects of cancer or treatment 28 7Recognising or preventing complications following treatment 26 7Contact information for healthcare professionals 21 5Bowel management 19 5Where to get medical supplies or medical equipment 6 2Recovery time 3 <1Maintaining psychological support during recovery 2 <1General rehabilitation information 1 <1

Coping information(207, 10%)

Emotional reactions, emotional support, coping with cancer 118 57Community counselling or support 27 13Support groups 24 12Spiritual support 20 10Support from other patients 15 7General coping information 3 1

Interpersonal/socialinformation (203; 10%)

Effect on family, friends or caregivers 85 42Effect on social life or leisure 51 25Effect on employment or work life 43 21Risk of disease for family members/genetic testing 22 11General interpersonal/social information 2 1

Prognosis information(196; 9%)

Recurrence of cancer 44 22Expectations for future health condition 31 16Effect on day-to-day activities 27 14Life span or survival rate 24 12Spread of disease or metastasis 21 11Effect on life plan or long-term goals 20 10Chance of cure 13 7General prognosis information 8 4Outcome of no treatment or delayed treatment 5 3Options if initial treatment fails 3 1

VAN MOSSEL et al.


1994 to the beginning of 2010. We noted an increasingnumber of articles written with successive years (with afew exceptions in the years 2000 and 2006).

Scoping reviews provide a map of the literature, high-lighting areas of particular interest. Our three main inter-ests were: information needs of people with colorectalcancer (summarised in Table 2), sources of this informa-tion (summarised in Table 3) and the timing of informa-tion needs (summarised in Table 5). The vast majority ofarticles referred to multiple stages across the cancer carecontinuum (n = 145:239, 61%) and three were classified asunknown (n = 3:239, 1%). However, in an effort to achievea clearer picture of the possible timing of informationneeds at individual stages of people’s experience, wefocused on the remaining 38% of studies (n = 91:239, 38%)that clearly attended to one stage along the cancer carecontinuum. Figure 2 illustrates the literature’s distribu-tion across the cancer care continuum, beginning withdiagnosis through to end of life. Analysing the articles this

way revealed greater attention to the post-treatment (sur-vivorship) (n = 39:91, 43%) and post-surgery (n = 22:91,24%) stages of the continuum, while diagnosis (n = 3:91,3%), radiation therapy (n = 3:91, 3%) and end-of-life(n = 2:91, 2%) received the least amount of attention.

Input from people who have/had colorectal cancer

Of the 239 articles in our scoping review, 64 (n = 64:239,27%) contained the views of people who have had a diag-nosis of colorectal cancer (Table 1). Data about their infor-mation needs were collected through interviews, focusgroups or surveys with a variety of people, including thepeople with the diagnosis in 19 (n = 19:239, 8%) articles,even though information needs was not the focus of thestudies. In 45 (n = 45:239, 19%) of the studies, researchersspecifically asked people who have had colorectal cancer‘What are your information needs?’ Five of the 45 studies(n = 5:45, 11%) asked people about their satisfaction with

Table 2. Continued

Category (n; % oftotal mentions) Subcategory


n %

Cancer-specificinformation (174; 8%)

Symptoms of cancer/management of symptoms 33 19Type of cancer/nature of disease 27 15Specific diagnosis information 26 15Aetiology and course of disease 21 12Physical side effects of disease 15 9General cancer-specific information 15 9Disease information 14 8Stage of disease 9 5Where to get information about specific cancer diagnosis 9 5Seeking second opinions 5 3

Surveillance/healthinformation(2+ years post treatment)(166; 8%)

Maintaining physical health or physical activity 38 23Maintaining psychological health 30 18Health behaviour and promotion 30 18Prevention or early detection 25 15Long-term side effects of cancer or treatment 12 7Stoma care 12 7Bowel management 8 5Nutrition 4 2Long-term post-treatment follow-up care 3 2General surveillance/health information 3 2Where to get medical supplies or equipment 1 1

Body image/sexualityinformation (129; 6%)

Sexuality 67 52Physical appearance/physical attractiveness 60 46General body image/sexuality information 2 2

Medical system information(70; 3%)

Interactions with healthcare providers 42 60Healthcare systems 16 23Experience or qualifications of physician and medical staff 8 11Available research 4 6Quality of medical equipment and supplies 0 0

Financial/legal information(32; 2%)

Cost of treatment, insurance coverage or other financial issues 28 87Advanced directives or writing a will 4 13



the information they received. Because of the low percent-age of articles that represented the views of people whohave had colorectal cancer and even fewer that askedpeople specifically about their information needs, wedecided to further analyse this set of data. This analysisindicated that people mentioned all 10 categories of infor-mation needs. There were 556 specific mentions in total.

DISCUSSION

General characteristics

We approached our analysis as a research team with rep-resentation from many disciplines in cancer care. Accord-ingly, we paid attention to the disciplinary nature of thecontent and authors of the articles in our review. Thus, aswe analysed the articles, it was interesting to note whichdisciplines had taken an interest in the issue of informa-tion needs for people who have had colorectal cancer andwhat those interests were. Of the entire set of 239 articles,that the significant percentage of literature was writtenby multidisciplinary teams (n = 93:239, 39%) might beindicative of the way in which healthcare providers worktogether to support their patients, thus the resulting mul-tidisciplinary approach to research. Nurses make up the

largest single discipline writing about the informationneeds of people with colorectal cancer in our study. Thisfact may speak to their interest and unique role in under-standing the needs of patients across their experience ofcancer care.

We were surprised, however, by two features of author-ship, noticeable by their absence. First, we noted the lowpercentage (3%) of literature written by dieticians ornutritionists (n = 6:239, 3%). From our previous researchand the clinical experience of not only the nutritionistson our team but others as well, we were very aware of theimportance of and relationship between food intake,digestion and bowel function for people with this type ofcancer. These issues are often the practice purview ofdieticians and nutritionists. We wonder if this topic is anemerging one for academics studying nutrition and dietet-ics. That this discipline has authored so few articles is ofparticular concern to the dieticians on our team.

The second noteworthy point relating to authorship isthat only three papers included in our study focused spe-cifically upon the subject of radiation therapy (n = 3:239,1%) and no radiation therapists authored papers indepen-dently, although some may have participated as part ofmultidisciplinary research teams. The apparent absenceof radiation therapists is unexpected given the number

Table 3. Types of information sources mentioned in reviewed articles (n = 239 articles, 648 mentions of sources)

Category (n; % of total mentions) Subcategory


n %

Healthcare professionals (318; 49%) Other healthcare professionals/healthcare professionals in general 117 37Physician (e.g. general practitioner, surgeon, oncologist) 104 33Nurse 92 29Other professionals (e.g. lawyers, financial planners) 5 1

Interpersonal (132; 20%) Counselling, support groups or support services 49 37Friends and/or family 44 33Other patients 25 19Clergy, church, synagogue or other place of worship 13 10General interpersonal sources 1 1

Printed materials (90; 14%) Brochures 48 53General printed materials 20 22Books 13 15Libraries/unspecified readings 5 6Magazines and newspapers 4 4

Media (57; 9%) Internet 40 70TV, radio or videos 16 28General media sources 1 2

Organisational/scientific resources (51; 8%) Telephone information services 23 45Charitable or professional organisations 14 27Medical journals or books 8 16Healthcare organisations 5 10General organisational/scientific resources 1 2

VAN MOSSEL et al.


of people who have radiation therapy as part of theirtreatment. Might the information needs of people diag-nosed with colorectal cancer and receiving radiationtherapy be better served if radiation therapists contributedto research?

Our analysis was enriched by the inter-professionalnature of our research team. The participation of nutri-tionists and a radiation therapist on our team drew ourattention to the absence of articles relating to their respec-

tive disciplines’ areas of concern and their disciplinaryauthorship and we find these absences troubling. It beginsto explain why people we have encountered in previousresearch projects and clinical experience complain aboutnot getting sufficient or timely information about theircolorectal cancer. If the disciplines who deal with theseissues are not engaged in research, there is a paucity ofresearch available upon which healthcare providers canbase their practice.

Information needs

Treatment-related information needs took centre stage inthe literature (n = 561:2122, 26%) because the articles thatmet the inclusion criteria for our scoping review werelargely published in academic journals whose primaryauthors and target audience is comprised of healthcareproviders engaged in the delivery of treatment or care ofthose in treatment. Since we eliminated articles relatingto prevention and screening, treatment remains as a sig-nificant source of interest to the readers of these journals.

Rehabilitation/post-treatment information needs re-ceived the second most mentions (n = 384:2122, 18%)

Figure 2. Distribution of reviewed articles across the cancer carecontinuum excluding multiple stages (n = 91).

Table 4. General characteristics of reviewed articles (n = 239)

n %

Type of articleResearch study 184 77Commentary/narrative 18 7.5Relating to clinical practice 18 7.5Literature review 11 5Description of a programme 5 2Other 3 1

Data collection methodMultiple collection methods 77 32Original questionnaire/survey 39 16Interview 31 13Existing questionnaire/survey 27 11Focus groups 1 1Chart review/medical records 1 1Other 20 8Unknown 43 18

Research study (n = 184) designQuantitative 82 45Qualitative 53 29Mixed methods 35 19Clinical trial 12 6Other 1 <1Unknown 1 <1

Field or discipline of the authorsMultidisciplinary team 93 39Nurse 64 27Physician 16 7Surgeon 11 5Psychosocial practitioner 10 4Dietician/nutritionist 6 2Oncologist 4 2Complementary or alternative

medicine practitioner1 <1

Radiation therapist 0 0Other 17 7Unknown 17 7

Geographical location of the workUSA 79 33UK 74 31Other European countries 33 14Australia 20 8Canada 14 6Other 19 8

Publication date1994–1997 9 41998–2001 38 162002–2005 70 292006–May 2010 122 51

Table 5. Timing (stages of the cancer care continuum) mentionedin the reviewed articles (n = 239)

Stage in cancer care continuum n %

Multiple stages 145 61Diagnosis 3 1General treatment 4 2Pre-surgery 6 3Post-surgery 22 9Chemotherapy 12 5Radiotherapy 3 1Post-treatment (survivorship) 39 16End-of-life 2 1Unknown 3 1



reflecting our experience with the significance of ongoingissues facing people leaving treatment. We were some-what surprised, however, that coping received only 10% ofthe mentions because we know that a cancer diagnosis istraumatic and colorectal cancer is among the least talkedabout of cancer diagnoses. We were also curious about theminimal attention given to surveillance health informa-tion (2+ years post treatment) (n = 166:2122, 8%) giventhe high survival rate for people with colorectal cancer.Many of the issues facing people leaving treatment lingerbeyond 2 years post treatment yet few researchers arepaying attention to information about these issues.

Information sources

In our review, the category other patients as an informa-tion source received relatively few mentions (n = 25:132,19%) and appears to contradict Klemm et al. (1998) whosuggest that other patients are an excellent source ofsupport for people diagnosed with colorectal cancer. It isnot surprising, however, that magazines and newspapers(n = 4:90, 4%) are mentioned infrequently since there is atendency in the popular printed literature to focus oncancer prevention and screening rather than post-diagnosisinformation. Additionally, the research of Gerlach et al.(1997b) reveals that popular women’s magazines reportvery little on colorectal cancer compared to other formsof cancer. While not necessarily considered a reliablesource of information on medical issues, such magazineshave an increasing number of articles relating to particu-lar kinds of cancer (e.g. breast) and cancer screening. Wewonder if in the future, there will be more articles inpopular literature relating to ‘survivorship’ (what wecalled post-treatment) as this term gains increasingrecognition, even popularity.

It is unsurprising that the media subcategory Internetcomprised 70% (n = 40:57, 70%) of mentions within themedia category as compared to the 28% combined for TV,radio or videos (n = 16:57, 28%). However, it is notablethat the category of media surfaced so infrequently com-pared to other forms of information sources. Given anincreasing tendency to assume that the Internet is acommon source of information for all subjects of inquiryby the public, including health information for personaluse, one might expect media more generally (thus Inter-net subcategory more specifically) to be mentioned morefrequently than it was. Additionally, this finding isnotable because plenty of research funding and hours havebeen spent analysing websites for their quality and quan-tity as a means to inform people diagnosed with cancer[e.g. see Sajid et al. (2008) and Cumbo et al. (2002)].

Timing

This study was initiated largely because of our assertionthat it is important to acknowledge, classify and under-stand the information needs of people diagnosed withcolorectal cancer. However, our ability to identify infor-mation needs reflects only part of the effort to improvecare for people. We believe a crucial component to provid-ing quality care is the ability to provide particular infor-mation at particular moments in time along the cancercare continuum, that is, accurately time the provision ofinformation. As stated earlier, we paid particular attentionto the articles that focused on a specific stage of the cancercontinuum (n = 91:239, 38%). It is notable that articlesabout the post-treatment period, often referred to as ‘sur-vivorship’, constituted 42% of articles (n = 39:91, 42%).This emphasis on ‘survivorship’ issues was not surprisingsince our scoping review purposefully excluded all articlesrelated to prevention and screening. However, it also mayreflect a more recent trend where researchers have begunto focus upon the care and needs of people living beyondtheir cancer treatment (Baravelli et al. 2009; Faul et al.2010).

Because so much of the literature addresses non-stage-specific information (n = 148:239, 62%), we wonder if wemight assume that insufficient attention is paid to needsof people at individual stages. Furthermore, the overallsuccess rate of treatment for people whose disease wascaught early might suggest there is not a lot of need forinformation for people dealing with end-of-life issues. Forthose who work in palliative care and recognise the sig-nificance of this issue, however, this apparent inattentive-ness to end-of-life concerns may be worrisome.

Although scoping reviews are intended to simply reporton the state of the literature, cross-sectioning our data aswe have reveals rich information, questions and even con-tradictions that can inform the direction of communica-tion and future research. For example, at least one articlediscussed the importance of relaying information aboutbody image/sexuality to people before undergoing surgerythat results in a stoma or before radiation therapy (DiFabio et al. 2008). In our study, body image/sexualityinformation needs are mentioned more often in articlesdealing with the post-surgery stage (n = 19:91, 21%) thanthe pre-surgery stage (n = 3:91, 3%). This contradictionmay suggest an unmet need.

In fact, across every category of information need, pre-surgery appeared underrepresented, comprising only 3%of the included articles (n = 6:239, 3%). This findingcontrasts with qualitative comments in the literatureabout the need for information provision prior to surgical

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treatment (Chaudhri et al. 2005) and the importance ofpeople being able to make informed decisions about theirupcoming treatment.

CONCLUSION

Following Arksey and O’Malley (2005), the goal of ourresearch was to examine the extent, range and nature ofresearch that addresses the information needs of peoplewho have had a diagnosis of colorectal cancer with a viewto identify gaps in the literature. Specifically, our interestwas in mapping the field of study to examine what hascaptured the attention of researchers and, by default, whataspects of this work has not been captured. Our researchlooked at the numerical representation of issues to whichresearchers attend, not the quality of the mentions.However, we wonder what parallels, if any, can be drawnabout the relationship between information needs,sources and timing as was mentioned in the literature andthe actual information needs of people with colorectalcancer, sources and timing of information. Might it be thecase that if information about a particular issue is never,or only infrequently, mentioned in the literature, thatinformation on that issue may not be sufficiently avail-able for healthcare providers to give to people who have aneed for it? If an issue has commanded little or no atten-tion, thus receiving few or no mentions in our scopingreview, it is hard to imagine that sufficient research isbeing conducted on that issue. Thus, practitioners aredealing with issues – or not – without the support ofresearch. While this study does not permit us to drawdefinitive conclusions, it has been valuable in partbecause it has opened up questions that can, and perhapsshould, guide further research.

Perhaps the state of knowledge on the subject of colorec-tal cancer patient information needs might benefit from ahighly detailed, longitudinal study that spans the entirecancer care continuum, particularly since, as van derMolen (1999) indicates, the information needs of peoplewith colorectal cancer change over time. It is not enough tosimply ask people the open-ended question: ‘What are yourinformation needs?’ and then expect answers that cover allneeds and all time periods when those needs are best met.The experience of a cancer diagnosis and treatment islargely a daunting one for people, most of whom likelycannot anticipate what information they will need or finduseful, nor when they might need it. While this scopingreview did not answer our initial question of what are theinformation needs of people with colorectal cancer, it hascertainly illuminated the landscape of literature dealingwith these needs and has highlighted how little work is

being done to improve the provision of information for thisgroup of people or for their healthcare providers who want,as a component of good practice, to offer timely informa-tion to their patients. Our research has been an essentialfirst step towards developing a research agenda wherewe truly attend to the information needs of people withcolorectal cancer.

Practical implications

According to Arksey and O’Malley (2005), it is thenature of a scoping review not to analyse or draw con-clusions. Instead, they suggest, scoping reviews provideus with a general snapshot of the literature’s landscape.Our scoping review offers the first step towards formu-lating a comprehensive research study to examine theinformation needs of people diagnosed with colorectalcancer. As a research team, we were constantly remind-ing ourselves what our scoping review told us and whatit did not. For example, the mention of an informationneed does not necessarily mean people with colorectalcancer actually articulated that need. While we cannotinfer an information need exists because it was men-tioned, we can say that a particular need received theattention of researchers.

The insignificant attention to two issues, diet/nutritionand bowel management, caught our interest in partbecause of the participation of dieticians on our team.While we believe people with colorectal cancer want andneed information about diet and nutrition, our studyreveals these issues are not capturing the attention ofresearchers. We wonder how practitioners can usefullyprovide patients with information about diet/nutritionwith apparently so little research attending to what theirneeds are. We are tempted to speculate that people are notreceiving timely information about diet and nutrition,making them an under-addressed area of patient informa-tion needs with implications for practice. This specula-tion was supported in our other research project focusingon post-treatment support.1

1We researched many ‘survivorship’ packages and developed a draft versionwe felt most useful to people finishing active treatment for colorectalcancer. We sought feedback from several groups of people who have hada diagnosis of colorectal cancer; healthcare providers such as nurses,dieticians, general practitioners, oncologists, pharmacists; and familymembers. After analysing their feedback, we amended our initial draftversion and created a Post-Treatment Information Package for People withColorectal Cancer. We are in the midst of piloting this informationpackage and the process of nurses giving it to people during a post-treatment discharge meeting. We will compare the effectiveness, desirabil-ity and feasibility of this process with those who experience the currentpractice and, depending on our results, hope to change standard practice toinclude nurses providing the information package at a discharge meetingwith people leaving treatment.



Similarly, we know bowel management is another majorissue for people with colorectal cancer, yet our studyreveals it has not captured the attention of academicresearchers. With so few articles included in our scopingreview dealing with bowel management, and fewer stillseeking input from people with colorectal cancer, it isimpossible to know how big an issue it actually is forpeople. Our clinical and research experience, however, tellsus this issue is intimately related to colorectal cancer andwe are concerned it has not been central to more researchthan our study reveals. Perhaps these results are indicativeof the social embarrassment surrounding the subject ofbodily waste and elimination and of diseases related to thelower digestive tract. It is surely an area of research that haspractice implications and compels attention.

We argue one of the best ways to discover what infor-mation people with colorectal cancer need, when theyneed it and how well those needs are met is to ask them.We have discovered in this scoping review, however, thatsuch consultation has rarely been done in order to informacademic articles (n = 64:239, 27%). This discovery maybe our most important: researchers rarely consult withpeople with colorectal cancer to learn about their infor-mation needs. Of the 64 articles in our review where thevoices of people with colorectal cancer were re/presented,none can be said to have been based on a comprehensiveresearch study about the types and timing of informationneeds of people diagnosed with colorectal cancer acrossthe cancer care continuum. We wonder how healthcareproviders can (claim to) know the information needs ofpeople with colorectal cancer if there is minimal researchavailable based on effective consultations with thosepeople. We acknowledge that clinical experience teachespractitioners a great deal. More formalised research wouldhelp to support their practice when providing informationto people diagnosed with colorectal cancer. More impor-tantly, how can healthcare providers meet those needs ata time that is most useful for people who need it? Argu-ably the most effective research studies about informationneeds include, or at least make reference to, the perspec-tives of people with colorectal cancer. Since only 45 of the239 or 19% of the articles included in our scoping reviewspecifically asked people about their information needs,much work remains to fill this gap. In establishing theabsence of the perspective of people with colorectal

cancer, our scoping review has made an important contri-bution and established the basis for further research.

While we are pleased with the outcome of our scopingreview, it is no surprise that we discovered several limi-tations and a few considerations for the future use of thismethodology. Our research team was large and several ofthe members were new to research, although they broughta wealth of clinical experience. The range of researchexperience and the number of people undertaking thesame exercises at the same time (six teams of twomembers each team) resulted in varying interpretationsand inconsistent conclusions (e.g. whether or not toinclude or exclude an article or how each category wasunderstood). We dealt with these challenges by having athird person who had read all the abstracts or articles(depending on which step we were at) available to dealwith any issue of disagreement. Consequently, we areconfident in our results. Regular discussions contributedclarity, consistency and integrity to our work, as did ourthird reader who read all the articles, and thus had anoverall view.

We came to realise part way through our scoping reviewthat we would be unable to answer our initial researchquestion: What are the information needs of people withcolorectal cancer? We have come to understand our workto be a necessary first step, a foundation upon which tobuild future research to approach our interest. Thus, forthis scoping review, we altered our question to: What doesthe literature tell us about which aspects of the informa-tion provided by healthcare professionals and needed bypeople with colorectal cancer across the cancer care con-tinuum have been addressed by researchers? By identify-ing which aspects were addressed, we also identified thegaps in the research. Future research to attend to thesegaps is necessary for the development and implementa-tion of communication and research strategies that willbetter meet the information needs of people with colorec-tal cancer than currently exists.

ACKNOWLEDGEMENTS

We would like to acknowledge Jennifer Waring andNicholas Basanky, Research Interns at British ColumbiaCancer Agency, Vancouver Island Centre, for their workin the preparation of this paper.

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