Curr Oncol, Vol. 21, pp. 165-173; doi: http://dx.doi.org/10.3747/co.21.1932
O R I G I N A L
A R T I C L E
Information needs and sources of information for patients during cancer follow-up M .A. Shea—B udgell M S c ,* X . K ostaras M S c* K.P. M y hill ba,* a n d N .A . H agen m d !'
ABSTRACT
KEYWORDS
Background
In fo rm atio n -seek in g , in fo rm atio n n eed s, follow -up care, su rv iv o rsh ip
N o w m o re th a n ever, c a n c e r p atien ts w a n t health in fo rm atio n . L ittle has been pu b lish ed to ch a rac te r ize the in fo rm atio n needs and preferred so u rces o f th at in fo rm atio n for p atien ts w ho have com pleted ca n c e r treatm en t.
Methods W e u se d a n atio n ally v alid ated in stru m e n t to p ro sp ectiv ely su rv ey p atien ts atten d in g a ca n c e r clinic for a p o st-tre a tm e n t follow -up visit. A ll patien ts w ho cam e to th e d esig n ated clinics b etw e en D e cem b er 2011 a n d Ju n e 2012 w e re ap p ro a c h e d ( N = 648), an d in fo rm atio n w as collected on ly from th o se w ho a g reed to p ro ceed .
Results T h e 411 p a tie n ts w h o c o m p le te d th e in s tru m e n t in clu d ed in d iv id u a ls w ith a w id e range o f p rim a ry m alignancies. T h eir d octor o r health professional w as o v erw h elm in g ly th e m o st tru ste d source o f ca n cer in fo rm atio n , follow ed b y the In tern et, fam ily, and frien d s. T h e least tru s te d sources o f in fo rm atio n in cluded radio, new spaper, and television. Patients m ost preferred to receive p ersonalized w ritten inform ation fro m th e ir h ealth care provider.
Conclusions C an ce r su rv iv o rs are k eenly in terested in re ceiv in g in fo rm atio n ab o u t cancer, d espite h av in g undergone o r fin ish ed activ e therapy. T he d ata in d icate that, for p atients, th eir health care p ro v id er is the m ost tru sted so u rc e o f c a n c e r in fo rm a tio n . C a n c e r p ro v id e rs sh ould ask p atien ts ab o u t the in fo rm atio n th e y w an t and should d irec t th em to tru ste d sources.
1. INTRODUCTION Today, u n d e rsta n d in g is g ro w in g about the im por tan ce o f involving can cer patients in decision-m aking about th e ir care, w ith the lite ratu re id en tify in g an association betw een participation in d ecision-m aking b y patien ts and th e ir fa m ilies an d im p ro v ed p atien t satisfactio n an d q u ality o f life1-4. W ith th at u n d er stan d in g com es the n eed for ad d itio n al inform atio n on d iag n o sis, p ro g n o sis, an d tre a tm e n t o p tio n s to su p p o rt p a tie n ts a n d th e ir fa m ilies in m a k in g in fo rm ed decisions. In ca n c e r care, m uch is k n o w n ab o u t the ch ar ac te ristic s o f new ly d iag n o sed p atien ts w ho do or do not see k in fo rm atio n ab o u t th e ir care, the top ics about w h ich th ey see k in fo rm atio n , a n d the m ean s th ey p re fer for re ceiv in g th at in fo rm atio n 5-8. In a re cent p o p u latio n -b ase d study, N a g le r an d co llea g u es9 re p o rte d th at the rate o f in fo rm atio n -se ek in g v aried b y tu m o u r ty p e : p a tie n ts w ith c o lo re c ta l c a n c e r re p o rte d co n sisten tly less in fo rm atio n -se ek in g th an did p atien ts w ith b re ast o r p ro state cancer, and th e d ifferen ces w ere m o st p ro n o u n c ed in p atien ts w ith early-stage disease. W ith reg ard to so u rces o f ca n cer in fo rm atio n , a su rv ey o f 800 patien ts an d 200 c a re givers re p o rte d th at a hig h p ro p o rtio n o f caregiv ers (48% ), but a low p ro p o rtio n o f patients (4.8% ), ac cessed In te rn e t re so u rces d irec tly for ca n cer info r m a tio n 10. A n o th er stu d y follow ed 104 p atien ts from th eir initial radiotherapy consultation through to th eir first follow -up v isit and re p o rte d that, although the in fo rm atio n n ee d s o f th o se p atien ts d eclin ed over th at p erio d , th e y re m a in ed h ig h 11. A lthough lim ited by sm all sam ple sizes and select p o p u latio n sam p lin g , the lite ra tu re su g g ests th a t the n eed for in fo rm atio n related to rehabilitation, d isease
C urrent O ncology— V olume 21,N umber 4,A ugust 20141 Copyright © 2014 Multimed Inc. Following publication in Current Oncology, the full text of each article is available immediately and archived in PubMed Central (PMC). |
SHEA-BUDGELL et al.
re c u rre n c e , h ealth pro m o tio n , and av ailab le su p p o rt se rv ic e s m ig h t also b e high for p a tie n ts d u rin g the fo llo w -u p p h a se o f th e ir c a n c e r c a re 12-15. W h e th e r th a t n ee d for in fo rm a tio n v a rie s b y c a n c e r site is still larg e ly u n k n o w n , b u t the g ro w in g lite ra tu re su g g e s ts th a t p ro v isio n o f p a tie n t-ta ilo re d in fo r m a tio n can e n s u re th a t th e a p p ro p ria te ty p e an d am o u n t o f in fo rm a tio n is re c e iv e d 16. S u rv iv o rsh ip ca re p la n s m ig h t b e an e ffe c tiv e w a y to p ro v id e s u c h in f o r m a tio n . A s u r v e y c o n d u c te d b y th e l i v e s t r o n g F o u n d atio n re p o rte d th a t su rv iv o rsh ip ca re p la n s— sp ecifically , th e tre a tm e n t su m m a rie s c o n ta in e d th e re in — are a sso c ia te d w ith a g re a te r p ro b a b ility o f m e e tin g p a tie n t in fo rm a tio n n ee d s c o n c e rn in g p o ssib le late effec ts o f tre a tm e n t, care re c e iv e d d u rin g tre a tm e n t, a n d care re c e iv e d a fte r tre a tm e n t17. G iv en th a t C a n a d ia n s d ia g n o se d w ith c a n c e r to d a y h a v e a b e tte r c h a n c e th a n p a tie n ts d ia g n o s e d a d e c a d e ag o o f s u rv iv in g th e first 5 y ea rs a fte r th e ir d ia g n o sis18, th e re is a c le a r n eed to u n d e rsta n d th e d iv erse in fo rm a tio n n ee d s o f th is g ro w in g p o p u la tio n o f lo n g -term su rv iv o rs. To id e n tify g ap s in p a tie n t k n o w le d g e a f te r c a n c e r tre a tm e n t, w e su rv e y ed p a tie n ts a tte n d in g ap p o in tm en ts at follow -up ca n c e r clin ics in C algary, A lb erta. O u r study aim ed to identify the inform ation n eed s o f p atien ts b ein g seen in a follow -up clinic and to asse ss w h e th e r th o se in fo rm a tio n n ee d s v arie d a c c o rd in g to d e m o g ra p h ic s, p rim a ry c a n c e r site, o r tim e sin ce last trea tm e n t. T he stu d y also aim ed to id e n tify p a tie n t p re fere n ces for the m ean s o f re ce iv in g h ea lth in fo rm atio n . T h re e specific re searc h q u estio n s w ere ad d ressed : •
•
•
In w h a t ty p e s o f in fo rm atio n are ca n cer patients in A lb e r ta m o st in te re s te d d u rin g th e p o s t tre a tm e n t an d su rv e illan c e perio d ? Do th e ir in fo rm atio n in terests v ary by p rim a ry ca n c e r d iag nosis, d em ographic factors, or so cio eco n o m ic factors? B y w h at m ean s do p o st-treatm en t can cer patients in A lb e rta m o st p re fer to receive inform ation?
T h e in te n d e d o u tc o m e o f th is re s e a rc h is to in fo rm k n o w led g e m an ag e m en t strateg ies to b e tte r m eet the info rm ation needs o f patients and th eir fam i lies a fte r ca n c e r tre a tm e n t w ith in a p ublicly fu n d ed , p ro v in cial, p o p u latio n -b ased ca n cer program .
2. METHODS 2.1 Study Participants A co n v en ien ce sam ple o f ad u lt patien ts w ith can cer w ho atten d e d o u tp atien t clin ics at the Tom B ak er C an ce r C en tre (C algary, A B ) an d Floly C ross C en tre (C alg ary , A B ) b etw e en D e c e m b e r 2011 and Ju n e 2012 w ere invited to p artic ip a te in this study. A fte r p atien ts w ere checked in by clin ic staff, they w ere
166
approached by a research assistan t w ho explain ed the n a tu re o f the stu d y and then p re -scre en ed in terested p artic ip a n ts by v erb ally co n firm in g th at th ey w ere b ein g seen for follow -up. U p o n co n sen t, eligible p ar ticip an ts w ere p ro v id ed w ith a w ritte n q u estio n n aire th at w e estim ated w ould take 10 m inutes to com plete. T he q u estio n n aire could be com pleted w ith th e a s sistan ce o f a fa m ily m em b er or co m panion. P atien ts w ere in fo rm ed th at th e ir re sp o n se s w o u ld b e k ep t confidential and w ould not negatively affect th eir care then o r in the fu tu re. E ach q u estio n n aire w as co d ed w ith a u n iq u e identification n u m b er to en su re co n fi dentiality. C om pleted q u estio n n aire s w ere re tu rn e d d irectly to th e re searc h assistant.
2.2 Questionnaire T he q u e stio n n a ire w as se lec ted b a se d on th e m e s related to p atien t in fo rm atio n n eed s identified in the peer-review ed literatu re, valid atio n o f the q u estio n n aire in ca n c e r p atien ts, q u estio n read ab ility , and a lig n m e n t o f th e su rv e y c o n te n t to o u r re s e a rc h questions. T he H ealth In fo rm atio n N atio n al T rends S urvey ( h i n t s ) fro m the U .S. N a tio n al C an ce r In stitu te w as found to m o st closely ad d ress each o f th o se n eed s, an d p erm issio n w as o b tain ed fro m the N a tio n al C an ce r In stitu te to u se relev an t q u estio n s from the 2003, 2005, and 2007 h i n t s v ersio n s19. A d raft o f the survey w as pilot-tested w ith 10 patien ts in the o u tp atien t clin ic at the H oly C ross C en tre before re cru itm en t began. F eedback derived fro m th e p ilo t testin g phase w as u sed to im prove su rv ey read ab ility and en su re accep tab le co n ten t an d feasibility. T he su rv ey in cluded item s related to the im p o rta n c e o f v ario u s ca n cer topics, u su al an d p re fe rre d so u rces for receiv in g ca n cer in fo rm atio n and ex ten t to w hich th o se so u rc e s o f c a n c e r in fo rm a tio n are tru s te d , p re ferred form ats for re ceiv in g ca n c e r in fo rm atio n , and w h e th e r in fo rm atio n found on the In tern et w as d iscu ssed w ith a health professional in the p ast year. D em o g rap h ic item s (age, sex, m arital statu s, level o f education, and incom e) and clin ical in fo rm atio n (for exam ple, ca n c e r ty p e and d ate o f diagno sis) w ere also requested.
2.3 Statistical Analysis D e sc rip tiv e s ta tistic s are u sed to s u m m a riz e th e c h a ra c te ristic s o f stu d y p a rtic ip a n ts an d th e so u rces an d ty p e s o f c a n c e r in fo rm atio n used. C o m p arativ e an a ly se s are u se d to e x a m in e d iffe re n c e s b e tw e e n p a tie n t g ro u p s d e fin e d a c c o rd in g to d is e a s e site (that is, b re a st, p ro state, n o n -p ro sta te g en ito u rin ary , g y n e c o lo g ic , cu ta n e o u s, an d g a stro in te stin a l) w ith re s p e c t to d is c u s s in g in fo rm a tio n fo u n d on th e In te rn e t w ith in th e p a st y e a r w ith a h e a lth p ro fe s sional, e x ten t to w h ich v a rio u s c a n c e r in fo rm a tio n so u rc es are tru s te d , p re fe rre d fo rm a ts fo r re c e iv in g c a n c e r in fo rm a tio n , an d th e im p o rta n c e o f v a rio u s
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PATIENT INFORMATION NEEDS DURING CANCER FOLLOW-UP CARE
c a n c e r to p ics. T h e SPSS so ftw a re a p p lic a tio n (ver sion 19.0; IB M , A rm o n k , N Y , U .S.A .) w as u sed to p e rfo rm all an aly ses. Scientific an d eth ics approval for th is stu d y w ere o b tain ed fro m th e A lb e rta C an c e r R esearch E thics C o m m ittee an d th e C onjoint H ealth R esearch E th ics B o ard o f th e F acu lties o f M edicine, N u rsin g , and K in esio lo g y at th e U n iv ersity o f C algary.
3. RESULTS 3.1 Patient Population T h e 648 u n iq u e p atien ts w ho cam e to th e desig n ated clin ics b etw e en D e cem b er 2011 an d June 2012 w ere ap p ro ach ed to p artic ip a te , an d o f those, 411 (63.4%) ag reed . N o fo rm al su rv e y w as co n d u cted to deter m in e re a so n s for n o n p artic ip a tio n , but d isin te re st an d n o t feelin g up to it w ere ex p lan atio n s co m m o n ly offered. Table i p re sen ts the socio d em o g rap h ic and tu m o u r c h a ra c te ristic s o f co n se n tin g respondents. A lm o st h a lf the p atien ts h ad been d iag n o sed w ith e ith e r b re a s t c a n c e r (23.4% ) o r p ro s ta te c a n c e r (22.1%). M o st resp o n d en ts w ere 50 years o f age or older (74.2% ), and only a sm all p roportion o f patients (7.1%) h ad b ee n tre a te d 5 or m ore y ears earlier. M ost re sp o n d en ts (89.8% ) rated th eir g eneral health statu s as ex cellen t or good, and only a sm all pro p o rtio n (few er than 5.5%) indicated that they had experienced sad n ess, n erv o u sn ess, restlessn ess, ho p elessn ess, or w o rth lessn e ss d u rin g th e p re c e d in g 30 days (data n o t show n).
3.2 Information-Seeking Patterns T able ii d e sc rib e s th e so u rces an d ty p e s o f ca n c e r in fo rm a tio n u s e d by p a tie n ts in th e ir m o st re cen t search. T h e m o st freq u en tly re p o rte d so u rce o f in fo rm atio n w as th e In te rn e t (57.4%); o th er co m m o n ly u sed so u rc es o f in fo rm atio n in clu d ed a h ealth p ro v id e r (32.6% ), b ro c h u res o r p am p h lets (25.1%), and c a n c e r o rg a n iz a tio n s (24.3% ). T h e least freq u en tly re p o rte d c a n c e r in fo rm a tio n s o u rc e s in c lu d e d a 1-800 telep h o n e n u m b e r (0.2% ), the lib ra ry (4.4%), a n d c o m p le m e n ta r y o r a lte r n a tiv e p ra c titio n e r s (4 .9 % ). T h e m o s t f r e q u e n tly r e p o r te d ty p e s o f in fo rm a tio n so u g h t in clu d ed in fo rm a tio n ab o u t a specific ty p e o f c a n c e r (43.1%), tre a tm e n t or cu res for c a n c e r (29.4% ), p ro g n o sis o r re c o v e ry fro m c a n c e r (29.0% ), an d p rev en tio n o f c a n c e r (27.0% ). T he least freq u en tly re p o rted ty p es o f can cer inform ation so u g h t in clu d ed w h ere to get m ed ical care (3.4%), p a y in g for m ed ica l care o r in su ra n c e (4.6% ), and c a n c e r o rg a n iz a tio n s (5.4%). T able in d e s c rib e s th e fre q u e n c y w ith w h ic h p atien ts d iscu ssed in fo rm atio n found on the Internet w ith th e ir h ealth p ro fessional d u rin g the p reced in g year. D ata are p resen ted for the g roup overall and by ca n c e r site. O v erall, m ore th an 80% o f resp o n d en ts
table
i
Sociodemographic characteristics of survey respondents Characteristic
Value
Respondents («) Current age group [n (%)] 80 Years Not specified Sex [n (%)] Men Women Not specified Marital status [n (%)] Married Living as married Divorced Widowed Separated Single, never married Not specified Education level [n (%)] High school or less Post-high school College or university Postgraduate Not specified Race [n (%)] White Other Not specified Site of malignancy [n (%)] Breast Prostate Gynecologic3 Cutaneous13 Gastrointestinal3 Non-prostate genitourinary3* More than 1 sitee Not specified Time since treatment [n (%)] >5 Years 1-5 Years 6-12 Months )]
236 (57.4) 134 (32.6) 103 (25.1) 100 (24.3) 71 (17.3) 66(16.1) 39 (9.5) 36 (8.8) 32 (7.8) 27 (6.6) 20 (4.9) 18 (4.4) 1 (0.2) 48(11.7) 10 (2.4) 177 (43.1) 121 (29.4) 119(29.0) 111 (27.0) 103 (25.1) 103 (25.1) 95 (23.1) 88(21.4) 54(13.1) 52 (12.7) 43 (10.5)
3.3 Information-Seeking Preferences F igure 1 illu strates the level o f tru st— th at is, “a lo t” to “ not at all”— th at resp o n d en ts re p o rte d h av in g in vario u s sources o f ca n cer inform ation. T he d o cto r or h ealth care p ro v id er w as o v erw h elm in g ly th e so u rce o f c a n c e r in fo rm a tio n m o st tru s te d b y th e g ro u p overall, follow ed by In tern et, an d fa m ily a n d frie n d s [F igure 1(A)], T he least tru ste d so u rces o f in fo rm a tion included radio, new spaper, and television. T he level o f tru st in the d o cto r or health care p ro v id er w as high acro ss all ca n cer sites; how ever, it w as h ig h est for respondents w ith g ynecologic p rim arie s and low est for resp o n d en ts w ith n o n -p ro sta te g en ito u rin a ry p rim a rie s an d cu tan e o u s p rim arie s. W e o b serv ed a significant asso c ia tio n b etw e en ca n c e r site and level o f tru s t in th e d o c to r o r h e a lth p ro fessio n al ( p < 0.0001); no significant asso ciatio n s w ere o b serv ed b etw e en ca n c e r site an d level o f tru s t in th e In te rn e t ( p = 0.077) o r in fam ily an d frie n d s {p = 0.066). W h e n ask e d to ra te th e im p o rta n c e — th a t is, “ v e ry im p o r ta n t” to “ n o t at all im p o r ta n t”— o f various cancer inform ation topics, responden ts rated inform ation about treatm en t or cures; a specific ty p e o f cancer; screening, testing, or early detection; and follow -up tests and exam s as the m ost im p o rtan t to p ics (F igure 2). We observed no significant asso cia tions b etw een can cer site and the rated im p o rtan ce o f inform ation about treatm ent or cures ( p = 0.270); about screening, testing, or early detection (p = 0.531); and ab o u t follow -up tests and ex a m s ( p = 0.068). However, inform ation about a specific ty p e o f cancer v aried significantly by cancer site (p = 0.020): it w as highest am ong respondents w ith gastrointestin al and
Discussion, in the preceding year, with a health profes sional about information found on the Internet
table iii
Response [n (%>)]
Cancer site Yes Alla Breast Prostate Gynecologicb Non-prostate guc Cutaneousd Gastrointestinal
No
125 (30.4) 188 (45.7) 36 (37.5) 45 (46.9) 28 (30.8) 38(41.8) 17 (29.3) 27 (46.6) 15 (65.2) 6 (26.1) 18 (32.7) 29 (52.7) 14 (56.0) 7 (28.0)
Internet non-user
Not specified
81 (19.7) 15(15.6) 24 (26.4) 12 (20.7) 2 (8.7) 5 (9.1) 4 (16.0)
17(4.1) 0(0) 1 (U ) 2 (3.4) 0(0) 3 (5.5) 0(0)
P = 0.000 42 (10.2) 22 (5.4) 19 (4.6) 14 (3.4) 17(4.1) 16 (3.9)
a Includes patients who did not specify their cancer site (n = 40) and those who specified more than 1 cancer site (n = 23). b Ovaries, uterus or endometrium, cervix, other. c Kidney, bladder, testicles. d Melanoma or non-melanoma skin cancer, or both e Stomach, pancreas, liver, colon, rectum, anus. gu = genitourinary.
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PATIENT INFORMATION NEEDS DURING CANCER FOLLOW-UP CARE
A. Whole group
B. Doctor / Health Care Provider
Television (n=366)
Gl (n=25)
Fam ily o rfrie n d s (n=3S8)
Cutaneous (n=55)
Radio (n=3S6)
GU, oth er (n=23)
Magazine (rv=3£S)
Gynecologic (n=58)
N ewspaper (n=389)
Prostate (n=86)
Interne t (n=366)
Breast(n=96)
Doctor (n=397)
W hole group (n=397) 0%
2 0 % 40 % 60% 8 0 % 10 0 %
0%
C. Internet
20!
D. Family and friends Gl (n=24)
Cutaneous (n=52) GU, o th er (n=22) Gynecologic (n=56) Prostate (n=79) Breast(n=85) W hole group (n=366) 0%
20%
40 %
60 %
80 % 10 0% Some
■ A lo t
A little
1 Level o f trust in cancer information sources. (A) Whole-group rating o f trust in cancer information sources. (B) Rating o f trust in a health care provider, by cancer site. (C) Rating o f trust in the Internet, by cancer site. (D) Rating o f trust in family and friends, by cancer site.
f ig u r e
cutaneous p rim aries and low est am ong respondents w ith non -p ro state g en ito u rin ary prim aries.
a book, m ag azin e, o r o th er p u b licatio n (54.8% vs. 41.4% ,/? < 0 .0 5 ).
3.4 Preferred Sources of Information
4.
P a rtic ip a n ts w ere ask e d to in d ic a te w h e th e r th ey w o u ld p re fe r to re c e iv e in fo rm a tio n fro m th e se sources: an in -p erso n m eetin g w ith a health care p ro fessional; re ad in g m aterials p erso n alized to th eir life style o r fam ily h isto ry ; e-m ail or Internet; a telephone call fro m a h ea lth pro fessional; a b o o k , m ag az in e, or o th er p u b licatio n ; an in teractiv e c d - r o m ; a vid eo or d v d ; o r an au dio c d o r m p 3 file (Table iv). T he source m ost co m m o n ly p referred w as an in -p erso n m eetin g w ith a h ea lth care p ro fessio n al (84.1%), follow ed by p erso n alized read in g m aterials (75.1%). We observed a sig n ifican t a sso c ia tio n b etw e en c a n c e r site and p referen ce for an in -p erso n m eetin g (p = 0.002); for p erso n aliz ed read in g m aterials (p = 0.001); for a tele phone call (p = 0.001); for a book, m ag azin e, or o th er publication (p = 0.001); and for an interactive c d - r o m (p = 0.008). A n analysis by sex o f the preferred m edia revealed th at m o re w om en th an m en p re ferred an in -p erso n m eetin g w ith a h ealth p ro fessio n al (87.2% vs. 77.0% ,/? < 0.05); p erso n aliz ed re ad in g m ateria ls (80.8% vs. 66.1% ,/? < 0.05); a telephone call from a health p ro fessio n al (72.1% vs. 54.0% ,/? < 0.05); and
To date, on ly lim ited d ata have b ee n p u b lish ed ab out the in fo rm atio n -se ek in g p referen ces o f patients u n derg o in g follow -up ca n cer care. O u r stu d y suggests th at, d espite h av in g com pleted active therapy, this population is v ery interested in receiving inform ation about cancer. In fact, inform ation about treatm ent and cu res w as rated h ig h est in term s o f im p o rtan ce. N ot su rp risin g ly , th e topics o f a specific ty p e o f ca n cer an d o f follow -up tests an d exam s w ere also am o n g the highest-rated. A re c e n t stu d y b y D o u m a e t a l.n lo o k e d at changes in the in fo rm atio n needs o f ra d io th erap y p a tien ts over tim e and found th at th o se n eed s declin ed so m ew h a t fro m in itia l c o n su lta tio n to follow -u p , bu t n ev erth eless re m a in ed high; in fact, inform atio n n eed s in cre ased or re m a in ed stable for 66% o f the stu d y resp o n d en ts by the tim e o f follow -up. A stu d y an aly zin g calls received b y a ca n cer in fo rm atio n ser v ice p ro v id ed b y the N a tio n al C an ce r In stitu te found that, am ong 3696 patients undergoing p o st-treatm en t follow -up, specific trea tm e n t inform ation w as sought by 43% , g en eral ca n cer site in fo rm atio n by 27% , and
C
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Copyright © 2014 Multimed Inc. Following publication in Current Oncology, the full text of each article is available immediately and archived in PubMed Central (PMC). |
SHEA-BUDGELL etal.
A. Whole group T re s tm e n t/c u re s (n = 3 9 6 ) S c re e n in g /te s tin g /e a rly d e te c tio n (n= 3 S 8 ) D iagnosis o f c a n c e r (n = 3 8 8 ) D ia gnostic te sts (n = 3 8 9 ) W h e re to g e t rn e d ica l c a re (n = 3 9 2 ) P re v e n tio n o f c a n c e r (n = 3 9 4 ) C o p in g w ith c a n c e r (n = 3 9 3 ) R esearch (n = 3 9 0 ) H e lp in g m y fa m ily c o p e w ith m y illn e ss (n= 3 S 6 ) Paying f o r m e d ic a l c a re /in s u ra n c e (n = 3 8 0 ) C o m p le m e n ta ry /a lte rn a tiv e tre a tm e n ts (n = 380) 0%
40%
20%
80%
1 00%
C. A specific type of cancer
B. Treatment/cures Gl
Gl
C u ta n e o u s
C u ta n eo u s
GU, o th e r
GU, o th e r
G yn e co lo g ic
G y n e c o lo g ic
P ro sta te
P ro sta te B re a st
B re a st W h o le g ro u p
60%
~j^ — 0%
W h o le g ro u p
1 20%
40%
60%
80%
0%
1 00%
20%
40%
60%
80%
1 00%
E. Follow-up tests and exams
D. Screening/testing/'early detection Gl C u ta n e o u s GU, o th e r G yn e co lo g ic P ro sta te B re a st W h o le g ro u p 0%
20%
40%
60%
80%
100%
■ V e ry Im p o r ta n t
■ Im p o r ta n t
■ S o m e w h a t Im p o rta n t
2 Importance of cancer information topics. (A) Whole-group rating of importance of all cancer information topics. (B) Rating o f importance o f information about treatment or cures, by cancer site. (C) Rating of importance of information about a specific type of cancer, by cancer site. (D) Rating of importance o f information about screening, testing, or early detection, by cancer site. (E) Rating of importance o f information aboutfollow-up tests and exams, by cancer site.
f ig u r e
p rev en tio n and risk facto rs in fo rm atio n by 10%13. In g en eral, in fo rm atio n -se ek in g about th o se topics by p atien ts d u rin g follow -up ap p ears to be sim ilar to th at by p atien ts in tre a tm e n t11,13’2o M ost resp o n d en ts in o u r study re p o rted having used the In tern et in p ast, and am ong all respondents, th e In tern et w as the m o st freq u en tly cited source o f c a n c e r in fo rm a tio n , fo llo w ed by a h e a lth care pro v id er, b ro ch u res or p am p h lets, an d ca n c e r o rg a n izatio n s. M ayer e t a /.15 also show ed that, am ong ca n c e r su rv iv o rs w ho com pleted th e 2003 version o f th e h i n t s su rv ey b y telephone, the In te rn e t w as the m ost p referred n o n —health care p ro v id er source o f in fo rm atio n , follow ed by fa m ily and frien d s, ca n cer IC
urrent
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o rg an izatio n s, an d the library. In co n tra st, an o th er su rv e y in v o lv in g p a tie n ts re c e iv in g tre a tm e n t for th o racic m alig n an cies (n = 139) show ed th at only 16% ac tu a lly sought in fo rm atio n from the In tern et, d espite 60% bein g in tere ste d in its use as an infor m ation so u rce21. T h is latter stu d y also found that, am o n g re sp o n d en ts w ho re p o rte d u sin g the In tern et, the In tern et-d eriv e d in fo rm atio n w as p erceiv ed to b e o f a q u ality sim ilar to th at o f o th er nonp h ysician so u rc e s21, su g g e stin g th a t tru s t in th e In te rn e t is eq u iv alen t to th at in o th er sources. In co n tra st, o u r resu lts suggest th at the In tern et is, in fact, tru ste d m ore than o th er so u rces such as televisio n , radio, n e w sp a p e r, an d m a g a z in e s. A p p ro x im a te ly 64% 2014
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PATIENT INFORMATION NEEDS DURING CANCER FOLLOW-UP CARE
table
iv Preferred ways of receiving information about cancer Response
In-person meeting Personalized reading E-mail/Intemet Telephone call Publication Interactive c d - rom Video or dvd Audio cd or m p 3 a b c d e gu
Cancer site [n (%>)]
P Value
Alla
Breast
Prostate
Gynecologicb
Nonprostate a if
Cutaneousd
Gastrointestinale
334 (84.1) 298 (75.1) 266 (67.0) 257 (64.7) 198 (49.9) 157 (39.5) 150(37.8) 68 (17.1)
83 (87.4) 78 (82.1) 61 (64.2) 68 (71.6) 58 (61.1) 42 (44.2) 36 (37.8) 19 (20.0)
64 (73.6) 63 (72.4) 60 (69.0) 40 (46.0) 34(39.1) 28 (32.2) 27 (31.0) 12(13.8)
54 (94.7) 46 (80.7) 40 (70.2) 45 (78.9) 28 (49.1) 25 (43.9) 23 (40.4) 9 (15.8)
18 (78.3) 10 (43.5) 6 (26.1) 15 (65.2) 7 (30.4) 9(39.1) 8 (34.8) 4 (17.4)
44 (80.0) 39 (70.9) 39 (70.9) 36 (65.5) 25 (45.5) 20 (36.4) 24 (43.6) 9 (16.4)
23 (95.8) 20 (83.3) 17 (70.8) 16 (66.7) 15 (62.5) 16 (66.7) 11 (45.8) 7 (29.2)
0.002 0.001 NS 0.001 0.001 0.008 NS NS
Includes patients who did not specify their cancer site (n = 40) and those who specified more than 1 cancer site (n = 23). Ovaries, uterus or endometrium, cervix, other. Kidney, bladder, testicles. Melanoma or non-melanoma skin cancer, or both Stomach, pancreas, liver, colon, rectum, anus. = genitourinary; ns = nonsignificant.
o f re s p o n d e n ts in o u r s tu d y re p o r te d th a t th e y tr u s t In te rn e t- d e riv e d in fo rm a tio n “ a lo t” o r “ so m e .” T h e p ro p o rtio n o f re s p o n d e n ts in th e h in t s (2 0 0 7 ) te le p h o n e s u rv e y w h o r e p o r te d tr u s tin g th e I n te r n e t “a lo t” o r “ so m e ” w a s e v en h ig h e r at 7 3% 22. B u t th e m o st tr u s te d s o u rc e o f in fo rm a tio n b y far, in o u r s tu d y a n d o th e r s 9,15,23, w a s a d o c to r o r o th e r h e a lth c a re p ro v id e r. C o m p le m e n ta ry o r a lte rn a tiv e p ra c titio n e rs a n d s e rv ic e s w e re n o t a f re q u e n tly c ite d s o u rc e o f c a n c e r in f o r m a tio n in o u r stu d y . T h a t fin d in g m a k e s se n se in lig h t o f d a ta fro m a 2 0 0 9 s tu d y b y B e n n e tt a n d c o lle a g u e s 24, w h ic h sh o w e d th a t a m o n g su rv iv o rs o f a d u lt c a n c e rs (n = 8 3 6 ) in N e w Z e a la n d , th e u se o f c o m p le m e n ta ry a n d a lte rn a tiv e m e d ic in e s e rv ic e s ra n g e d fro m
O R I G I N A L
A R T I C L E
Information needs and sources of information for patients during cancer follow-up M .A. Shea—B udgell M S c ,* X . K ostaras M S c* K.P. M y hill ba,* a n d N .A . H agen m d !'
ABSTRACT
KEYWORDS
Background
In fo rm atio n -seek in g , in fo rm atio n n eed s, follow -up care, su rv iv o rsh ip
N o w m o re th a n ever, c a n c e r p atien ts w a n t health in fo rm atio n . L ittle has been pu b lish ed to ch a rac te r ize the in fo rm atio n needs and preferred so u rces o f th at in fo rm atio n for p atien ts w ho have com pleted ca n c e r treatm en t.
Methods W e u se d a n atio n ally v alid ated in stru m e n t to p ro sp ectiv ely su rv ey p atien ts atten d in g a ca n c e r clinic for a p o st-tre a tm e n t follow -up visit. A ll patien ts w ho cam e to th e d esig n ated clinics b etw e en D e cem b er 2011 a n d Ju n e 2012 w e re ap p ro a c h e d ( N = 648), an d in fo rm atio n w as collected on ly from th o se w ho a g reed to p ro ceed .
Results T h e 411 p a tie n ts w h o c o m p le te d th e in s tru m e n t in clu d ed in d iv id u a ls w ith a w id e range o f p rim a ry m alignancies. T h eir d octor o r health professional w as o v erw h elm in g ly th e m o st tru ste d source o f ca n cer in fo rm atio n , follow ed b y the In tern et, fam ily, and frien d s. T h e least tru s te d sources o f in fo rm atio n in cluded radio, new spaper, and television. Patients m ost preferred to receive p ersonalized w ritten inform ation fro m th e ir h ealth care provider.
Conclusions C an ce r su rv iv o rs are k eenly in terested in re ceiv in g in fo rm atio n ab o u t cancer, d espite h av in g undergone o r fin ish ed activ e therapy. T he d ata in d icate that, for p atients, th eir health care p ro v id er is the m ost tru sted so u rc e o f c a n c e r in fo rm a tio n . C a n c e r p ro v id e rs sh ould ask p atien ts ab o u t the in fo rm atio n th e y w an t and should d irec t th em to tru ste d sources.
1. INTRODUCTION Today, u n d e rsta n d in g is g ro w in g about the im por tan ce o f involving can cer patients in decision-m aking about th e ir care, w ith the lite ratu re id en tify in g an association betw een participation in d ecision-m aking b y patien ts and th e ir fa m ilies an d im p ro v ed p atien t satisfactio n an d q u ality o f life1-4. W ith th at u n d er stan d in g com es the n eed for ad d itio n al inform atio n on d iag n o sis, p ro g n o sis, an d tre a tm e n t o p tio n s to su p p o rt p a tie n ts a n d th e ir fa m ilies in m a k in g in fo rm ed decisions. In ca n c e r care, m uch is k n o w n ab o u t the ch ar ac te ristic s o f new ly d iag n o sed p atien ts w ho do or do not see k in fo rm atio n ab o u t th e ir care, the top ics about w h ich th ey see k in fo rm atio n , a n d the m ean s th ey p re fer for re ceiv in g th at in fo rm atio n 5-8. In a re cent p o p u latio n -b ase d study, N a g le r an d co llea g u es9 re p o rte d th at the rate o f in fo rm atio n -se ek in g v aried b y tu m o u r ty p e : p a tie n ts w ith c o lo re c ta l c a n c e r re p o rte d co n sisten tly less in fo rm atio n -se ek in g th an did p atien ts w ith b re ast o r p ro state cancer, and th e d ifferen ces w ere m o st p ro n o u n c ed in p atien ts w ith early-stage disease. W ith reg ard to so u rces o f ca n cer in fo rm atio n , a su rv ey o f 800 patien ts an d 200 c a re givers re p o rte d th at a hig h p ro p o rtio n o f caregiv ers (48% ), but a low p ro p o rtio n o f patients (4.8% ), ac cessed In te rn e t re so u rces d irec tly for ca n cer info r m a tio n 10. A n o th er stu d y follow ed 104 p atien ts from th eir initial radiotherapy consultation through to th eir first follow -up v isit and re p o rte d that, although the in fo rm atio n n ee d s o f th o se p atien ts d eclin ed over th at p erio d , th e y re m a in ed h ig h 11. A lthough lim ited by sm all sam ple sizes and select p o p u latio n sam p lin g , the lite ra tu re su g g ests th a t the n eed for in fo rm atio n related to rehabilitation, d isease
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SHEA-BUDGELL et al.
re c u rre n c e , h ealth pro m o tio n , and av ailab le su p p o rt se rv ic e s m ig h t also b e high for p a tie n ts d u rin g the fo llo w -u p p h a se o f th e ir c a n c e r c a re 12-15. W h e th e r th a t n ee d for in fo rm a tio n v a rie s b y c a n c e r site is still larg e ly u n k n o w n , b u t the g ro w in g lite ra tu re su g g e s ts th a t p ro v isio n o f p a tie n t-ta ilo re d in fo r m a tio n can e n s u re th a t th e a p p ro p ria te ty p e an d am o u n t o f in fo rm a tio n is re c e iv e d 16. S u rv iv o rsh ip ca re p la n s m ig h t b e an e ffe c tiv e w a y to p ro v id e s u c h in f o r m a tio n . A s u r v e y c o n d u c te d b y th e l i v e s t r o n g F o u n d atio n re p o rte d th a t su rv iv o rsh ip ca re p la n s— sp ecifically , th e tre a tm e n t su m m a rie s c o n ta in e d th e re in — are a sso c ia te d w ith a g re a te r p ro b a b ility o f m e e tin g p a tie n t in fo rm a tio n n ee d s c o n c e rn in g p o ssib le late effec ts o f tre a tm e n t, care re c e iv e d d u rin g tre a tm e n t, a n d care re c e iv e d a fte r tre a tm e n t17. G iv en th a t C a n a d ia n s d ia g n o se d w ith c a n c e r to d a y h a v e a b e tte r c h a n c e th a n p a tie n ts d ia g n o s e d a d e c a d e ag o o f s u rv iv in g th e first 5 y ea rs a fte r th e ir d ia g n o sis18, th e re is a c le a r n eed to u n d e rsta n d th e d iv erse in fo rm a tio n n ee d s o f th is g ro w in g p o p u la tio n o f lo n g -term su rv iv o rs. To id e n tify g ap s in p a tie n t k n o w le d g e a f te r c a n c e r tre a tm e n t, w e su rv e y ed p a tie n ts a tte n d in g ap p o in tm en ts at follow -up ca n c e r clin ics in C algary, A lb erta. O u r study aim ed to identify the inform ation n eed s o f p atien ts b ein g seen in a follow -up clinic and to asse ss w h e th e r th o se in fo rm a tio n n ee d s v arie d a c c o rd in g to d e m o g ra p h ic s, p rim a ry c a n c e r site, o r tim e sin ce last trea tm e n t. T he stu d y also aim ed to id e n tify p a tie n t p re fere n ces for the m ean s o f re ce iv in g h ea lth in fo rm atio n . T h re e specific re searc h q u estio n s w ere ad d ressed : •
•
•
In w h a t ty p e s o f in fo rm atio n are ca n cer patients in A lb e r ta m o st in te re s te d d u rin g th e p o s t tre a tm e n t an d su rv e illan c e perio d ? Do th e ir in fo rm atio n in terests v ary by p rim a ry ca n c e r d iag nosis, d em ographic factors, or so cio eco n o m ic factors? B y w h at m ean s do p o st-treatm en t can cer patients in A lb e rta m o st p re fer to receive inform ation?
T h e in te n d e d o u tc o m e o f th is re s e a rc h is to in fo rm k n o w led g e m an ag e m en t strateg ies to b e tte r m eet the info rm ation needs o f patients and th eir fam i lies a fte r ca n c e r tre a tm e n t w ith in a p ublicly fu n d ed , p ro v in cial, p o p u latio n -b ased ca n cer program .
2. METHODS 2.1 Study Participants A co n v en ien ce sam ple o f ad u lt patien ts w ith can cer w ho atten d e d o u tp atien t clin ics at the Tom B ak er C an ce r C en tre (C algary, A B ) an d Floly C ross C en tre (C alg ary , A B ) b etw e en D e c e m b e r 2011 and Ju n e 2012 w ere invited to p artic ip a te in this study. A fte r p atien ts w ere checked in by clin ic staff, they w ere
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approached by a research assistan t w ho explain ed the n a tu re o f the stu d y and then p re -scre en ed in terested p artic ip a n ts by v erb ally co n firm in g th at th ey w ere b ein g seen for follow -up. U p o n co n sen t, eligible p ar ticip an ts w ere p ro v id ed w ith a w ritte n q u estio n n aire th at w e estim ated w ould take 10 m inutes to com plete. T he q u estio n n aire could be com pleted w ith th e a s sistan ce o f a fa m ily m em b er or co m panion. P atien ts w ere in fo rm ed th at th e ir re sp o n se s w o u ld b e k ep t confidential and w ould not negatively affect th eir care then o r in the fu tu re. E ach q u estio n n aire w as co d ed w ith a u n iq u e identification n u m b er to en su re co n fi dentiality. C om pleted q u estio n n aire s w ere re tu rn e d d irectly to th e re searc h assistant.
2.2 Questionnaire T he q u e stio n n a ire w as se lec ted b a se d on th e m e s related to p atien t in fo rm atio n n eed s identified in the peer-review ed literatu re, valid atio n o f the q u estio n n aire in ca n c e r p atien ts, q u estio n read ab ility , and a lig n m e n t o f th e su rv e y c o n te n t to o u r re s e a rc h questions. T he H ealth In fo rm atio n N atio n al T rends S urvey ( h i n t s ) fro m the U .S. N a tio n al C an ce r In stitu te w as found to m o st closely ad d ress each o f th o se n eed s, an d p erm issio n w as o b tain ed fro m the N a tio n al C an ce r In stitu te to u se relev an t q u estio n s from the 2003, 2005, and 2007 h i n t s v ersio n s19. A d raft o f the survey w as pilot-tested w ith 10 patien ts in the o u tp atien t clin ic at the H oly C ross C en tre before re cru itm en t began. F eedback derived fro m th e p ilo t testin g phase w as u sed to im prove su rv ey read ab ility and en su re accep tab le co n ten t an d feasibility. T he su rv ey in cluded item s related to the im p o rta n c e o f v ario u s ca n cer topics, u su al an d p re fe rre d so u rces for receiv in g ca n cer in fo rm atio n and ex ten t to w hich th o se so u rc e s o f c a n c e r in fo rm a tio n are tru s te d , p re ferred form ats for re ceiv in g ca n c e r in fo rm atio n , and w h e th e r in fo rm atio n found on the In tern et w as d iscu ssed w ith a health professional in the p ast year. D em o g rap h ic item s (age, sex, m arital statu s, level o f education, and incom e) and clin ical in fo rm atio n (for exam ple, ca n c e r ty p e and d ate o f diagno sis) w ere also requested.
2.3 Statistical Analysis D e sc rip tiv e s ta tistic s are u sed to s u m m a riz e th e c h a ra c te ristic s o f stu d y p a rtic ip a n ts an d th e so u rces an d ty p e s o f c a n c e r in fo rm atio n used. C o m p arativ e an a ly se s are u se d to e x a m in e d iffe re n c e s b e tw e e n p a tie n t g ro u p s d e fin e d a c c o rd in g to d is e a s e site (that is, b re a st, p ro state, n o n -p ro sta te g en ito u rin ary , g y n e c o lo g ic , cu ta n e o u s, an d g a stro in te stin a l) w ith re s p e c t to d is c u s s in g in fo rm a tio n fo u n d on th e In te rn e t w ith in th e p a st y e a r w ith a h e a lth p ro fe s sional, e x ten t to w h ich v a rio u s c a n c e r in fo rm a tio n so u rc es are tru s te d , p re fe rre d fo rm a ts fo r re c e iv in g c a n c e r in fo rm a tio n , an d th e im p o rta n c e o f v a rio u s
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PATIENT INFORMATION NEEDS DURING CANCER FOLLOW-UP CARE
c a n c e r to p ics. T h e SPSS so ftw a re a p p lic a tio n (ver sion 19.0; IB M , A rm o n k , N Y , U .S.A .) w as u sed to p e rfo rm all an aly ses. Scientific an d eth ics approval for th is stu d y w ere o b tain ed fro m th e A lb e rta C an c e r R esearch E thics C o m m ittee an d th e C onjoint H ealth R esearch E th ics B o ard o f th e F acu lties o f M edicine, N u rsin g , and K in esio lo g y at th e U n iv ersity o f C algary.
3. RESULTS 3.1 Patient Population T h e 648 u n iq u e p atien ts w ho cam e to th e desig n ated clin ics b etw e en D e cem b er 2011 an d June 2012 w ere ap p ro ach ed to p artic ip a te , an d o f those, 411 (63.4%) ag reed . N o fo rm al su rv e y w as co n d u cted to deter m in e re a so n s for n o n p artic ip a tio n , but d isin te re st an d n o t feelin g up to it w ere ex p lan atio n s co m m o n ly offered. Table i p re sen ts the socio d em o g rap h ic and tu m o u r c h a ra c te ristic s o f co n se n tin g respondents. A lm o st h a lf the p atien ts h ad been d iag n o sed w ith e ith e r b re a s t c a n c e r (23.4% ) o r p ro s ta te c a n c e r (22.1%). M o st resp o n d en ts w ere 50 years o f age or older (74.2% ), and only a sm all p roportion o f patients (7.1%) h ad b ee n tre a te d 5 or m ore y ears earlier. M ost re sp o n d en ts (89.8% ) rated th eir g eneral health statu s as ex cellen t or good, and only a sm all pro p o rtio n (few er than 5.5%) indicated that they had experienced sad n ess, n erv o u sn ess, restlessn ess, ho p elessn ess, or w o rth lessn e ss d u rin g th e p re c e d in g 30 days (data n o t show n).
3.2 Information-Seeking Patterns T able ii d e sc rib e s th e so u rces an d ty p e s o f ca n c e r in fo rm a tio n u s e d by p a tie n ts in th e ir m o st re cen t search. T h e m o st freq u en tly re p o rte d so u rce o f in fo rm atio n w as th e In te rn e t (57.4%); o th er co m m o n ly u sed so u rc es o f in fo rm atio n in clu d ed a h ealth p ro v id e r (32.6% ), b ro c h u res o r p am p h lets (25.1%), and c a n c e r o rg a n iz a tio n s (24.3% ). T h e least freq u en tly re p o rte d c a n c e r in fo rm a tio n s o u rc e s in c lu d e d a 1-800 telep h o n e n u m b e r (0.2% ), the lib ra ry (4.4%), a n d c o m p le m e n ta r y o r a lte r n a tiv e p ra c titio n e r s (4 .9 % ). T h e m o s t f r e q u e n tly r e p o r te d ty p e s o f in fo rm a tio n so u g h t in clu d ed in fo rm a tio n ab o u t a specific ty p e o f c a n c e r (43.1%), tre a tm e n t or cu res for c a n c e r (29.4% ), p ro g n o sis o r re c o v e ry fro m c a n c e r (29.0% ), an d p rev en tio n o f c a n c e r (27.0% ). T he least freq u en tly re p o rted ty p es o f can cer inform ation so u g h t in clu d ed w h ere to get m ed ical care (3.4%), p a y in g for m ed ica l care o r in su ra n c e (4.6% ), and c a n c e r o rg a n iz a tio n s (5.4%). T able in d e s c rib e s th e fre q u e n c y w ith w h ic h p atien ts d iscu ssed in fo rm atio n found on the Internet w ith th e ir h ealth p ro fessional d u rin g the p reced in g year. D ata are p resen ted for the g roup overall and by ca n c e r site. O v erall, m ore th an 80% o f resp o n d en ts
table
i
Sociodemographic characteristics of survey respondents Characteristic
Value
Respondents («) Current age group [n (%)] 80 Years Not specified Sex [n (%)] Men Women Not specified Marital status [n (%)] Married Living as married Divorced Widowed Separated Single, never married Not specified Education level [n (%)] High school or less Post-high school College or university Postgraduate Not specified Race [n (%)] White Other Not specified Site of malignancy [n (%)] Breast Prostate Gynecologic3 Cutaneous13 Gastrointestinal3 Non-prostate genitourinary3* More than 1 sitee Not specified Time since treatment [n (%)] >5 Years 1-5 Years 6-12 Months )]
236 (57.4) 134 (32.6) 103 (25.1) 100 (24.3) 71 (17.3) 66(16.1) 39 (9.5) 36 (8.8) 32 (7.8) 27 (6.6) 20 (4.9) 18 (4.4) 1 (0.2) 48(11.7) 10 (2.4) 177 (43.1) 121 (29.4) 119(29.0) 111 (27.0) 103 (25.1) 103 (25.1) 95 (23.1) 88(21.4) 54(13.1) 52 (12.7) 43 (10.5)
3.3 Information-Seeking Preferences F igure 1 illu strates the level o f tru st— th at is, “a lo t” to “ not at all”— th at resp o n d en ts re p o rte d h av in g in vario u s sources o f ca n cer inform ation. T he d o cto r or h ealth care p ro v id er w as o v erw h elm in g ly th e so u rce o f c a n c e r in fo rm a tio n m o st tru s te d b y th e g ro u p overall, follow ed by In tern et, an d fa m ily a n d frie n d s [F igure 1(A)], T he least tru ste d so u rces o f in fo rm a tion included radio, new spaper, and television. T he level o f tru st in the d o cto r or health care p ro v id er w as high acro ss all ca n cer sites; how ever, it w as h ig h est for respondents w ith g ynecologic p rim arie s and low est for resp o n d en ts w ith n o n -p ro sta te g en ito u rin a ry p rim a rie s an d cu tan e o u s p rim arie s. W e o b serv ed a significant asso c ia tio n b etw e en ca n c e r site and level o f tru s t in th e d o c to r o r h e a lth p ro fessio n al ( p < 0.0001); no significant asso ciatio n s w ere o b serv ed b etw e en ca n c e r site an d level o f tru s t in th e In te rn e t ( p = 0.077) o r in fam ily an d frie n d s {p = 0.066). W h e n ask e d to ra te th e im p o rta n c e — th a t is, “ v e ry im p o r ta n t” to “ n o t at all im p o r ta n t”— o f various cancer inform ation topics, responden ts rated inform ation about treatm en t or cures; a specific ty p e o f cancer; screening, testing, or early detection; and follow -up tests and exam s as the m ost im p o rtan t to p ics (F igure 2). We observed no significant asso cia tions b etw een can cer site and the rated im p o rtan ce o f inform ation about treatm ent or cures ( p = 0.270); about screening, testing, or early detection (p = 0.531); and ab o u t follow -up tests and ex a m s ( p = 0.068). However, inform ation about a specific ty p e o f cancer v aried significantly by cancer site (p = 0.020): it w as highest am ong respondents w ith gastrointestin al and
Discussion, in the preceding year, with a health profes sional about information found on the Internet
table iii
Response [n (%>)]
Cancer site Yes Alla Breast Prostate Gynecologicb Non-prostate guc Cutaneousd Gastrointestinal
No
125 (30.4) 188 (45.7) 36 (37.5) 45 (46.9) 28 (30.8) 38(41.8) 17 (29.3) 27 (46.6) 15 (65.2) 6 (26.1) 18 (32.7) 29 (52.7) 14 (56.0) 7 (28.0)
Internet non-user
Not specified
81 (19.7) 15(15.6) 24 (26.4) 12 (20.7) 2 (8.7) 5 (9.1) 4 (16.0)
17(4.1) 0(0) 1 (U ) 2 (3.4) 0(0) 3 (5.5) 0(0)
P = 0.000 42 (10.2) 22 (5.4) 19 (4.6) 14 (3.4) 17(4.1) 16 (3.9)
a Includes patients who did not specify their cancer site (n = 40) and those who specified more than 1 cancer site (n = 23). b Ovaries, uterus or endometrium, cervix, other. c Kidney, bladder, testicles. d Melanoma or non-melanoma skin cancer, or both e Stomach, pancreas, liver, colon, rectum, anus. gu = genitourinary.
IC urrent O ncology— V olume 21, N umber 4, A ugust 2014 | Copyright © 2014 Multimed Inc. Following publication in Current Oncology, the full text of each article is available immediately and archived in PubMed Central (PMC).
PATIENT INFORMATION NEEDS DURING CANCER FOLLOW-UP CARE
A. Whole group
B. Doctor / Health Care Provider
Television (n=366)
Gl (n=25)
Fam ily o rfrie n d s (n=3S8)
Cutaneous (n=55)
Radio (n=3S6)
GU, oth er (n=23)
Magazine (rv=3£S)
Gynecologic (n=58)
N ewspaper (n=389)
Prostate (n=86)
Interne t (n=366)
Breast(n=96)
Doctor (n=397)
W hole group (n=397) 0%
2 0 % 40 % 60% 8 0 % 10 0 %
0%
C. Internet
20!
D. Family and friends Gl (n=24)
Cutaneous (n=52) GU, o th er (n=22) Gynecologic (n=56) Prostate (n=79) Breast(n=85) W hole group (n=366) 0%
20%
40 %
60 %
80 % 10 0% Some
■ A lo t
A little
1 Level o f trust in cancer information sources. (A) Whole-group rating o f trust in cancer information sources. (B) Rating o f trust in a health care provider, by cancer site. (C) Rating o f trust in the Internet, by cancer site. (D) Rating o f trust in family and friends, by cancer site.
f ig u r e
cutaneous p rim aries and low est am ong respondents w ith non -p ro state g en ito u rin ary prim aries.
a book, m ag azin e, o r o th er p u b licatio n (54.8% vs. 41.4% ,/? < 0 .0 5 ).
3.4 Preferred Sources of Information
4.
P a rtic ip a n ts w ere ask e d to in d ic a te w h e th e r th ey w o u ld p re fe r to re c e iv e in fo rm a tio n fro m th e se sources: an in -p erso n m eetin g w ith a health care p ro fessional; re ad in g m aterials p erso n alized to th eir life style o r fam ily h isto ry ; e-m ail or Internet; a telephone call fro m a h ea lth pro fessional; a b o o k , m ag az in e, or o th er p u b licatio n ; an in teractiv e c d - r o m ; a vid eo or d v d ; o r an au dio c d o r m p 3 file (Table iv). T he source m ost co m m o n ly p referred w as an in -p erso n m eetin g w ith a h ea lth care p ro fessio n al (84.1%), follow ed by p erso n alized read in g m aterials (75.1%). We observed a sig n ifican t a sso c ia tio n b etw e en c a n c e r site and p referen ce for an in -p erso n m eetin g (p = 0.002); for p erso n aliz ed read in g m aterials (p = 0.001); for a tele phone call (p = 0.001); for a book, m ag azin e, or o th er publication (p = 0.001); and for an interactive c d - r o m (p = 0.008). A n analysis by sex o f the preferred m edia revealed th at m o re w om en th an m en p re ferred an in -p erso n m eetin g w ith a h ealth p ro fessio n al (87.2% vs. 77.0% ,/? < 0.05); p erso n aliz ed re ad in g m ateria ls (80.8% vs. 66.1% ,/? < 0.05); a telephone call from a health p ro fessio n al (72.1% vs. 54.0% ,/? < 0.05); and
To date, on ly lim ited d ata have b ee n p u b lish ed ab out the in fo rm atio n -se ek in g p referen ces o f patients u n derg o in g follow -up ca n cer care. O u r stu d y suggests th at, d espite h av in g com pleted active therapy, this population is v ery interested in receiving inform ation about cancer. In fact, inform ation about treatm ent and cu res w as rated h ig h est in term s o f im p o rtan ce. N ot su rp risin g ly , th e topics o f a specific ty p e o f ca n cer an d o f follow -up tests an d exam s w ere also am o n g the highest-rated. A re c e n t stu d y b y D o u m a e t a l.n lo o k e d at changes in the in fo rm atio n needs o f ra d io th erap y p a tien ts over tim e and found th at th o se n eed s declin ed so m ew h a t fro m in itia l c o n su lta tio n to follow -u p , bu t n ev erth eless re m a in ed high; in fact, inform atio n n eed s in cre ased or re m a in ed stable for 66% o f the stu d y resp o n d en ts by the tim e o f follow -up. A stu d y an aly zin g calls received b y a ca n cer in fo rm atio n ser v ice p ro v id ed b y the N a tio n al C an ce r In stitu te found that, am ong 3696 patients undergoing p o st-treatm en t follow -up, specific trea tm e n t inform ation w as sought by 43% , g en eral ca n cer site in fo rm atio n by 27% , and
C
urrent
O
DISCUSSION
nco lo g y
— V
o lu m e
21, N u m b e r 4, A
ugust
20141
Copyright © 2014 Multimed Inc. Following publication in Current Oncology, the full text of each article is available immediately and archived in PubMed Central (PMC). |
SHEA-BUDGELL etal.
A. Whole group T re s tm e n t/c u re s (n = 3 9 6 ) S c re e n in g /te s tin g /e a rly d e te c tio n (n= 3 S 8 ) D iagnosis o f c a n c e r (n = 3 8 8 ) D ia gnostic te sts (n = 3 8 9 ) W h e re to g e t rn e d ica l c a re (n = 3 9 2 ) P re v e n tio n o f c a n c e r (n = 3 9 4 ) C o p in g w ith c a n c e r (n = 3 9 3 ) R esearch (n = 3 9 0 ) H e lp in g m y fa m ily c o p e w ith m y illn e ss (n= 3 S 6 ) Paying f o r m e d ic a l c a re /in s u ra n c e (n = 3 8 0 ) C o m p le m e n ta ry /a lte rn a tiv e tre a tm e n ts (n = 380) 0%
40%
20%
80%
1 00%
C. A specific type of cancer
B. Treatment/cures Gl
Gl
C u ta n e o u s
C u ta n eo u s
GU, o th e r
GU, o th e r
G yn e co lo g ic
G y n e c o lo g ic
P ro sta te
P ro sta te B re a st
B re a st W h o le g ro u p
60%
~j^ — 0%
W h o le g ro u p
1 20%
40%
60%
80%
0%
1 00%
20%
40%
60%
80%
1 00%
E. Follow-up tests and exams
D. Screening/testing/'early detection Gl C u ta n e o u s GU, o th e r G yn e co lo g ic P ro sta te B re a st W h o le g ro u p 0%
20%
40%
60%
80%
100%
■ V e ry Im p o r ta n t
■ Im p o r ta n t
■ S o m e w h a t Im p o rta n t
2 Importance of cancer information topics. (A) Whole-group rating of importance of all cancer information topics. (B) Rating o f importance o f information about treatment or cures, by cancer site. (C) Rating of importance of information about a specific type of cancer, by cancer site. (D) Rating of importance o f information about screening, testing, or early detection, by cancer site. (E) Rating of importance o f information aboutfollow-up tests and exams, by cancer site.
f ig u r e
p rev en tio n and risk facto rs in fo rm atio n by 10%13. In g en eral, in fo rm atio n -se ek in g about th o se topics by p atien ts d u rin g follow -up ap p ears to be sim ilar to th at by p atien ts in tre a tm e n t11,13’2o M ost resp o n d en ts in o u r study re p o rted having used the In tern et in p ast, and am ong all respondents, th e In tern et w as the m o st freq u en tly cited source o f c a n c e r in fo rm a tio n , fo llo w ed by a h e a lth care pro v id er, b ro ch u res or p am p h lets, an d ca n c e r o rg a n izatio n s. M ayer e t a /.15 also show ed that, am ong ca n c e r su rv iv o rs w ho com pleted th e 2003 version o f th e h i n t s su rv ey b y telephone, the In te rn e t w as the m ost p referred n o n —health care p ro v id er source o f in fo rm atio n , follow ed by fa m ily and frien d s, ca n cer IC
urrent
O
n c o lo g y
— V
o lu m e
21,
N
um ber
4, A
ugust
o rg an izatio n s, an d the library. In co n tra st, an o th er su rv e y in v o lv in g p a tie n ts re c e iv in g tre a tm e n t for th o racic m alig n an cies (n = 139) show ed th at only 16% ac tu a lly sought in fo rm atio n from the In tern et, d espite 60% bein g in tere ste d in its use as an infor m ation so u rce21. T h is latter stu d y also found that, am o n g re sp o n d en ts w ho re p o rte d u sin g the In tern et, the In tern et-d eriv e d in fo rm atio n w as p erceiv ed to b e o f a q u ality sim ilar to th at o f o th er nonp h ysician so u rc e s21, su g g e stin g th a t tru s t in th e In te rn e t is eq u iv alen t to th at in o th er sources. In co n tra st, o u r resu lts suggest th at the In tern et is, in fact, tru ste d m ore than o th er so u rces such as televisio n , radio, n e w sp a p e r, an d m a g a z in e s. A p p ro x im a te ly 64% 2014
| Copyright © 2014 Multimed Inc. Following publication in Current Oncology, the full text of each article is available immediately and archived in PubMed Central (PMC).
PATIENT INFORMATION NEEDS DURING CANCER FOLLOW-UP CARE
table
iv Preferred ways of receiving information about cancer Response
In-person meeting Personalized reading E-mail/Intemet Telephone call Publication Interactive c d - rom Video or dvd Audio cd or m p 3 a b c d e gu
Cancer site [n (%>)]
P Value
Alla
Breast
Prostate
Gynecologicb
Nonprostate a if
Cutaneousd
Gastrointestinale
334 (84.1) 298 (75.1) 266 (67.0) 257 (64.7) 198 (49.9) 157 (39.5) 150(37.8) 68 (17.1)
83 (87.4) 78 (82.1) 61 (64.2) 68 (71.6) 58 (61.1) 42 (44.2) 36 (37.8) 19 (20.0)
64 (73.6) 63 (72.4) 60 (69.0) 40 (46.0) 34(39.1) 28 (32.2) 27 (31.0) 12(13.8)
54 (94.7) 46 (80.7) 40 (70.2) 45 (78.9) 28 (49.1) 25 (43.9) 23 (40.4) 9 (15.8)
18 (78.3) 10 (43.5) 6 (26.1) 15 (65.2) 7 (30.4) 9(39.1) 8 (34.8) 4 (17.4)
44 (80.0) 39 (70.9) 39 (70.9) 36 (65.5) 25 (45.5) 20 (36.4) 24 (43.6) 9 (16.4)
23 (95.8) 20 (83.3) 17 (70.8) 16 (66.7) 15 (62.5) 16 (66.7) 11 (45.8) 7 (29.2)
0.002 0.001 NS 0.001 0.001 0.008 NS NS
Includes patients who did not specify their cancer site (n = 40) and those who specified more than 1 cancer site (n = 23). Ovaries, uterus or endometrium, cervix, other. Kidney, bladder, testicles. Melanoma or non-melanoma skin cancer, or both Stomach, pancreas, liver, colon, rectum, anus. = genitourinary; ns = nonsignificant.
o f re s p o n d e n ts in o u r s tu d y re p o r te d th a t th e y tr u s t In te rn e t- d e riv e d in fo rm a tio n “ a lo t” o r “ so m e .” T h e p ro p o rtio n o f re s p o n d e n ts in th e h in t s (2 0 0 7 ) te le p h o n e s u rv e y w h o r e p o r te d tr u s tin g th e I n te r n e t “a lo t” o r “ so m e ” w a s e v en h ig h e r at 7 3% 22. B u t th e m o st tr u s te d s o u rc e o f in fo rm a tio n b y far, in o u r s tu d y a n d o th e r s 9,15,23, w a s a d o c to r o r o th e r h e a lth c a re p ro v id e r. C o m p le m e n ta ry o r a lte rn a tiv e p ra c titio n e rs a n d s e rv ic e s w e re n o t a f re q u e n tly c ite d s o u rc e o f c a n c e r in f o r m a tio n in o u r stu d y . T h a t fin d in g m a k e s se n se in lig h t o f d a ta fro m a 2 0 0 9 s tu d y b y B e n n e tt a n d c o lle a g u e s 24, w h ic h sh o w e d th a t a m o n g su rv iv o rs o f a d u lt c a n c e rs (n = 8 3 6 ) in N e w Z e a la n d , th e u se o f c o m p le m e n ta ry a n d a lte rn a tiv e m e d ic in e s e rv ic e s ra n g e d fro m
