ABSTRACT
BackgroundCancer follow-up places a significant burden on hospital outpatient clinics. There are increasing calls to develop alternative models of provision.
Aim
To undertake a systematic review of qualitative studies examining patients’ and healthcare professionals’ views about cancer follow-up.
Design of study Systematic review. Setting
Primary and secondary care. Method
Comprehensive literature searches included: 19 electronic databases, online trial registries, conference proceedings, and bibliographies of included studies. Eligible studies included qualitative studies examining patients’ and healthcare professionals’ views of cancer follow-up. Studies of patients with any type of cancer, considered free of active disease, or no longer receiving active treatment were included. Findings were synthesised using thematic analysis. Results
Nineteen studies were included; seven were linked to randomised controlled trials. Eight studies examined the views of healthcare professionals (four of which included GPs) and 16 examined the views of patients. Twelve descriptive themes were identified, from which 12 perceived implications for practice were derived. Most themes related to conventional follow-up in secondary care. Some views concerning other models of care were based on participants’ ideas, rather than experiences. Conclusion
Patients’ main concern is recurrent disease, and they find regular follow-up, expertise of specialists, and quick access to tests reassuring. Information regarding the effectiveness of follow-up is not given to patients who also have unmet information needs, which would help them to cope and be more involved. Continuity of care, unhurried consultations, and psychosocial support are important, but sometimes lacking in secondary care. GPs are thought to be unwilling and to have insufficient time and expertise to conduct follow-up.
Keywords
long-term care; neoplasms; oncologic nursing; outpatients; primary health care; systematic review.
INTRODUCTION
Conventional hospital-based follow-up of cancer patients places a significant burden on hospital outpatient clinics, and is of debatable value for many cancers in terms of early diagnosis of recurrence and improved survival.1–6Consequently, there is continued interest in the provision of follow-up or ongoing management in different and innovative ways. Models typically include primary care follow-up,7 nurse-led follow-up,8 telephone-based follow-up, and patient-initiated follow-up (or combinations of these).
As the number of cancer survivors increases, the
focus of follow-up is shifting towards the
management of a chronic condition. In the UK there is growing government pressure for the NHS to encourage patients with chronic conditions to take
RA Lewis, MSc, BSc, lecturer;RD Neal, PhD, FRCGP, senior clinical lecturer;NH Williams, PhD, FRCGP, senior clinical lecturer;M Hendry, BA Research fellow;B France, research assistant;C Wilkinson, MD, FRCGP, Department of Primary Care and Public Health, North Wales Clinical School, School of Medicine, Cardiff University, Wrexham;D Russell, PhD, senior research fellow/trial statistician, Institute for Medical and Social Care Research, Bangor University;NSA Stuart,DM, FRCP, North Wales Clinical School, Bangor University;DA Hughes, PhD reader, Centre for Economics and Policy in Health, Bangor University, Bangor, Bangor.I Russell, PhD, FRCGP, FRCP(Ed), professor, School of Medicine, Swansea University, Swansea.
D Weller, PhD, MRCGP, FRCP, professor, Department of General Practice, University of Edinburgh, Edinburgh. Address for correspondence
Ruth Lewis, Cardiff University, Department of Primary Care and Public Health, School of Medicine, North Wales Clinical School, Gwenfro Building Unit 6/7, Wrexham Technology Park, Wrexham, LL13 7YP. E-mail: lewisr17@cf.ac.uk Submitted:3 November 2008;Editor’s response:6 January 2009;final acceptance:6 February 2009.
©British Journal of General Practice
This is the full-length article of an abridged version
published in print. Cite this article as:Br J Gen Pract2009;
DOI: 10.3399/bjgp09X453576.
Patients’ and healthcare
professionals’ views of
cancer follow-up:
systematic review
Ruth A Lewis, Richard D Neal, Maggie Hendry, Barbara France, Nefyn H Williams, Daphne Russell,
Dyfrig A Hughes, Ian Russell, Nicholas SA Stuart, David Weller and Clare Wilkinson
more responsibility for their own care,9and there is some evidence from other chronic conditions, such as diabetes, that empowerment could lead to better patient outcomes.10,11 For cancer survivorship, management as a chronic condition would need a comprehensive care package with the input of both primary and secondary care.
The views of patients and healthcare
professionals are important in informing policy, especially in the absence of conclusive evidence regarding the comparative value of cancer follow-up
models.12 Therefore, a systematic review of
qualitative studies was undertaken to explore patients’ and healthcare professionals’ views and preferences with regard to cancer follow-up. This was part of a broader systematic review that also evaluated the effectiveness and cost-effectiveness of primary versus secondary care follow-up of cancer patients, the findings of which are presented separately.13 The broader review also looked at nurse-led follow-up and the findings of which are reported elsewhere.14
METHOD
The following databases were searched (from inception to February 2007) using strategies designed specifically for each database: MEDLINE,
MEDLINE in process, EMBASE, CINAHL,
PsychINFO, AMED, BIOSIS, Index to Scientific and Technical proceedings, Science Citation Index, Social Science Citation Index, Cochrane Central Register of Controlled Trials, Database of Abstracts of Reviews of Effects, Cochrane Database of Systematic Reviews, Health Technology Assessment database, NHS Economic Evaluation database, System for Information on Grey Literature, British Nursing Index, Health Management Information Consortium, National Research Register, and other trial registries (n= 7) available via the internet. No language restrictions were used; full details of the search strategy are available on request and
described elsewhere (R Lewis et al, unpublished
data, 2007). (For more information see Appendix 1, Lewis et al13). Additional references were identified through reviewing the bibliographies of 16 retrieved systematic reviews and 42 included studies, and hand searching five conference proceedings.
The search included qualitative studies that used interviews, focus groups, or open-ended questions to elicit patients’ or healthcare professionals’ views
or preferences regarding cancer follow-up
(irrespective of provider). Surveys using only closed questions were excluded. The population of interest included patients of any age who had received treatment for any type and stage of cancer. Only studies that examined follow-up for the following
purposes were included: to identify recurrent tumours or new primary disease; to provide support
for complications or delayed side-effects of
treatments; or to identify patients requiring additional help or treatment (for example, for functional or psychological problems). Studies of patients still receiving hospital-based treatment (for example; radiotherapy), rehabilitation, or specialist palliative care were excluded. However, patients in follow-up who were receiving long-term therapy, such as hormonal treatment for breast or prostate cancer, (but free of active disease) were included.
Review of people’s views was carried out using the
method reported by Thomas and Harnden,15 and
Hardenet al,16which followed guidelines for thematic analysis of textual data. Two reviewers independently assessed the results of the literature searches and the relevance of retrieved studies. Data pertaining to each study’s methodology and context were extracted by one reviewer and checked by a second independent reviewer, while the data were extracted by two independent reviewers. Disagreements were resolved by discussion.
Quality assessment was conducted by two independent reviewers based on the Critical
Appraisal Skills Programme17 and a checklist
developed by Greenhalgh and Taylor.18
Disagreements were resolved by discussion. Studies were not excluded from the analysis based on quality.
Key points identified in the results section of the primary studies represented the basic units of the review analysis. Where possible, these were extracted verbatim to avoid misinterpretation. Where results were presented in more lengthy, unfocused prose, the key points were paraphrased succinctly, adhering as closely as possible to the language and meaning of the original. Data reported in the discussion were disregarded, as were direct quotes. The resulting list of key points was then coded by two independent reviewers using QSR N6 software (QSR International), with most points being allocated multiple codes. The final coding was agreed by three
How this fits in
Routine hospital follow-up does not lead to early diagnosis of recurrence and improved survival in most cancer sites. However, patients want follow-up to allay fears of recurrence and provide psychosocial support. There is a need for improved information and education for cancer patients to enable them to make an informed choice about follow-up and to promote their autonomy. In terms of organisation, improved communication between primary and secondary care is essential. Alternative models of follow-up should involve the whole cancer team, including primary care, and include training, support, and rapid access to investigations.
reviewers. The codes were organised into a
hierarchical tree structure and overarching
descriptive themes identified using group
discussion, in keeping with the methodology reported by Thomaset al.15The study then moved onto the next stage of the analysis that went beyond the findings of the original studies: from peoples’ views captured by the descriptive themes, the reviewers inferred positive or negative characteristics for different aspects of follow-up.
The implication of these findings for policy and practice was then considered, in light of the broader aims of the review, the findings of the effectiveness section of the review, the increasing push to discontinue routine hospital follow-up, and the development of alternative models of follow-up. This
was initially developed by two independent
reviewers and then checked and commented on by two further independent reviewers. The final list of ‘ideal world’ implications was discussed and agreed by three reviewers, while re-examining the data captured by the descriptive themes.
RESULTS
The electronic searches identified 43 861 references of which 232 papers were retrieved in full. Thirty-one additional studies were identified by hand searching (see Figure 1, Lewiset al13).
Nineteen relevant qualitative studies published in full were identified.1,12,19–35 Two further studies that were only published as conference abstracts were identified, and are not discussed further due to the limited information presented.36,37Two projects on the National Research Register were identified, for which no results were available.38,39
Eight studies were linked to randomised controlled trials (RCTs) evaluating different modes of follow-up (included in the effectiveness section of this systematic review).19,21,22,24,27–29,31 Two were related to the same trial and examined the intervention and control groups separately.28,29
A summary of included studies is presented in Table 1. Ten studies evaluated breast cancer follow-up,1,19,20,22,24,26,28–30,32four multiple cancer sites,21,27,34,35two colorectal,12,33two lung,25,31and one study evaluated gynaecological cancers.23 Eight studies examined the views of healthcare professionals,1,21,25–27,30,31,35four of which examined the views of GPs.21,25–27Sixteen studies included patients;1,12,19–26,28–30,32–34 15 collected
patients’ views on routine hospital
follow-up;1,12,19–26,29,30,32–34 three included patients who experienced nurse-led follow-up,24,28,30 and two included patients who received GP follow-up.12,21The number of included patients ranged from six20 to 11319 (median = 24), and healthcare professionals from two31 to 1201 (median = 7). The number of
included participants was not stated for one study.26 Most studies were European (12 undertaken in the UK,1,12,19,20,22–26,30–32 two in Norway,21,27 and two in Sweden28,29). Two were carried out in Canada33,35and one in China (Hong Kong).34 The time period over which the data were collected was not stated for most studies; where it was reported (six studies) most of these studies were undertaken within the time period 2000–2005,12,19,21,25,30 with one study collecting data between 1992 and 1993.35 Various data-collection methods were used, with some studies using more than one method, which included direct observation of consultation,1focus groups22,26,34
in-depth interviews,12,20,25 semi-structured
interviews,1,19,21,23,27–33,35 structured interviews,24 and
survey questionnaires (with open-ended
questions).1,21,25
Study quality is presented in Table 2. Most studies were poorly reported and the quality of the methods could not be assessed. In general, the sample
strategy and size, and reasons why some
participants declined to participate were poorly described or not reported. Summary characteristics of included participants were missing in many studies. The researchers’ perspectives could have influenced responses in some studies (for example, nurse investigating nurse-led follow-up), and was often not reported. Few studies reported testing the credibility of their findings; it was not clear if all the data had been taken into account and whether negative or discrepant findings were addressed. When reporting conclusions, few studies explored alternative explanations or discussed the limitations of their findings.
Findings of included studies
Twelve descriptive themes were identified; these
were interpreted to develop a list of 12
recommendations for policy and practice (Box 1). Fear of recurrence was the main reason for patients’ anxiety and need for reassurance. Patients feared recurrence, especially during the early phase after completing treatment,1,22,23,32,34 and wanted regular surveillance.22 Healthcare professionals’ reluctance to talk about ‘cure’, and patients’ understanding of ‘remission’ as a stage in the disease rather than a period of good health, helped to maintain the focus on detection of recurrence.23,26
Conventional follow-up, although intended to allay anxiety, exacerbated patients’ need for reassurance. A system of regular check-ups with tests and examinations provided only temporary reassurance; and by the time of the patients’ next appointment their anxiety had returned.1,12,20,22,23,25,26,29,32 Healthcare
Systematic Reviews
P a rt o f R C T ? Ty p e o f C a n c e r S tu d y ty p e S tu d y a n d c o u n tr y (t ri a l re fe re n c e ) P a rt ic ip a n ts fo llo w -u p s it e (t h e o re ti c a l p e rs p e c ti v e ) C o m m e n ts A d e w u y i-D a lt o n , Y E S — C o n tr o l P a ti e n ts ( n = 1 1 3 ) H o s p it a l B re a s t S e m i-s tr u c tu re d in te rv ie w s C a te g o ri e s a n d th e m e s n o t d e ri v e d fr o m th e d a ta — 1 9 9 8 1 9 g ro u p o n ly (N o t s ta te d ) th e m e s w e re d e c id e d in a d v a n c e a n d d a ta w e re s e le c te d U K (h o s p it a l v s G P ) 5 1 to fi t th e th e m e s A lle n , 2 0 0 4 2 0 N O P a ti e n ts ( n = 6 ) H o s p it a l B re a s t In -d e p th in te rv ie w s A ll p a ti e n ts tr e a te d b y s a m e s u rg e o n a n d o n c o lo g is t; n o t U K (P h e n o m e n o g ra p h y ) s ta te d h o w th e y w e re s e le c te d /r e c ru it e d . R e s e a rc h c o n d u c te d b y a M c M ill a n b re a s t c a n c e r n u rs e A n v ik , 2 0 0 6 2 1 Y E S — In te rv e n ti o n P a ti e n ts ( n = 9 1 ) In te g ra te d M u lt ip le G P s : s e m i-s tr u c tu re d in te rv ie w s P a ti e n ts ’ v ie w s b a s e d o n fr e e te x t c o m m e n ts fr o m N o rw a y + c o n tr o l g ro u p s G P s ( n = 2 3 ) h o s p it a l s it e a n d fo c u s g ro u p s ( n = 6 ; 1 7 q u e s ti o n n a ir e s (c o n tr o l g ro u p ) o r c o m m e n ts re c o rd e d b y G P s (f o rm a l c o n s u lt a ti o n a n d G P p a rt ic ip a n ts in e a c h g ro u p ). in re s p o n s e to o p e n -e n d e d q u e s ti o n s u s e d d u ri n g w it h G P p lu s P a ti e n ts : s u rv e y q u e s ti o n n a ir e s c o n s u lt a ti o n (in te rv e n ti o n g ro u p ) h o s p it a l fo llo w -u p v s — o p e n e n d e d q u e s ti o n s — o r c o n v e n ti o n a l h o s p it a l s a m e q u e s ti o n s a s k e d b y G P s , fo llo w -u p ) 5 2 G P s m a d e n o te s o f a n s w e rs (P h e n o m e n o g ra p h y ) B e a v e r, 2 0 0 5 1 N O C lin ic a l c o n s u lt a ti o n ( n = 1 0 6 ); H o s p it a l B re a s t D ir e c t o b s e rv a ti o n o f c o n s u lt a ti o n ; W e ll-c o n d u c te d a n d c le a rl y re p o rt e d s tu d y U K H C P s ( n = 1 4 ); p a ti e n ts ( n = 9 2 ); a u d io -r e c o rd e d . P a ti e n ts : s u rv e y H C P s = c o n s u lt a n t s u rg e o n , q u e s ti o n n a ir e s ; o p e n + c lo s e d c o n s u lt a n t c lin ic a l o n c o lo g is t, q u e s ti o n s . H C P s : S e m i-s tr u c tu re d s p e c ia lis t re g is tr a r, s p e c ia lis t b re a s t in te rv ie w s . (E th n o g ra p h ic a p p ro a c h c a re n u rs e , c lin ic s ta ff n u rs e s , – n o n -p a rt ic ip a n t o b s e rv a ti o n , a n d c lin ic m a n a g e r m o d if ie d g ro u n d e d th e o ry ) B ra d b u rn , 1 9 9 5 2 2 N O — (U s e d to P a ti e n ts ( n = 2 9 ) H o s p it a l B re a s t 3 fo c u s g ro u p s o f P a rt ic ip a n ts p ri m a ri ly re c ru it e d v ia lo c a l c a n c e r s u p p o rt U K in fo rm R C T 8 – 1 2 p a rt ic ip a n ts g ro u p s . P o o rl y re p o rt e d s tu d y p ro to c o l (N o t s ta te d ) d e v e lo p m e n t, h o s p it a l v s G P ) 5 1 B ra d le y, 1 9 9 9 2 3 N O P a ti e n ts ( n = 1 2 ) H o s p it a l G y n a e S e m i-s tr u c tu re d in te rv ie w s P o o rl y re p o rt e d s tu d y. O n e re s e a rc h e r c o n d u c te d a ll th e U K (G ro u n d e d th e o ry ) in te rv ie w s ; n o t s ta te d if > 1 re s e a rc h e r in v o lv e d in a n a ly s is , a n d n o q u a lit y c o n tr o l m e a s u re s d e s c ri b e d . A n a ly s e s , th e m e s , a n d c a te g o ri e s n o t fu lly e x p la in e d . Q u o ta ti o n s w e re a n o n y m o u s — n o m e a n s o f te lli n g w h e th e r th e y w e re fr o m d iff e re n t p a ti e n ts o r n o t B ro w n , 2 0 0 2 2 4U K Y E S — P a ti e n ts ( n = 6 1 ) H o s p it a l a n d B re a s t S tr u c tu re d in te rv ie w s (f a c e -t o In te rv ie w s c o n d u c te d b y a re s e a rc h n u rs e ; s tr u c tu re d In te rv e n ti o n + P I-N u rs e fa c e o r te le p h o n e ) in te rv ie w s c h e d u le in c lu d e d 6 it e m s th a t w e re n o t re p o rt e d . c o n tr o l g ro u p (t e le p h o n e ) (N o t s ta te d ) O n ly v e ry b ri e f d e ta ils o f a n a ly s is g iv e n ; n u m b e r o f re s e a rc h e rs (N u rs e v s in v o lv e d n o t s ta te d . Q u a lit a ti v e d a ta a n a ly s e d in a h o s p it a l) 2 4 p re d o m in a n tl y q u a n ti ta ti v e m a n n e r u s in g s ta ti s ti c a l te s ts to c o m p a re g ro u p s . N o m e th o d re p o rt e d to e n s u re a c c u ra c y o f g ra d in g d a ta in to b in a ry o u tc o m e s .. . c o n ti n u e dT
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P a rt o f R C T ? Ty p e o f C a n c e r S tu d y ty p e S tu d y a n d c o u n tr y (t ri a l re fe re n c e ) P a rt ic ip a n ts fo llo w -u p s it e (t h e o re ti c a l p e rs p e c ti v e ) C o m m e n ts C o x , 2 0 0 6 2 5 N O P a ti e n ts ( n = 5 4 ), G P s ( n = 3 8 ), H o s p it a l L u n g S u rv e y q u e s ti o n n a ir e s , o n Q u a lit a ti v e e le m e n t o f s tu d y p o o rl y re p o rt e d a n d in p la c e s U K re la ti v e s ( n = 2 0 ), c lin ic a l s ta ff (p a rt ic ip a n ts v ig n e tt e s ; in -d e p th in te rv ie w s d iff ic u lt to fo llo w . N o ra ti o n a le g iv e n fo r s e le c ti n g ra n d o m in v o lv e d in p a ti e n t c a re ( n = 3 1 ). g iv e n v ig n e tt e (G ro u n d e d th e o ry ) s a m p le fo r in te rv ie w s ; p u rp o s iv e s a m p le m ig h t (R e s p o n s e ra te s : p a ti e n ts 6 3 % , s c e n a ri o s o f 4 h a v e b e e n m o re a p p ro p ri a te . P a ti e n t a n d re la ti v e v ie w s re la tiv e s 5 0 % , st a ff 6 5 % , G P s 2 9 % ) m e th o d s o f re p o rt e d s e p a ra te ly to s ta ff a n d G P s , b u t n o t c le a r w h y. 6 0 /7 2 e lig ib le p a ti e n ts a p p ro a c h e d fo llo w -u p : W h e n d iff e re n t th e m e s e m e rg e d fr o m s a m e in te rv ie w to p a rt ic ip a te ; 5 4 a g re e d a n d 3 4 te le p h o n e , s c h e d u le , e x p lo ra ti o n o f d iff e re n c e s a n d o v e rl a p s in re tu rn e d th e q u e s ti o n n a ir e . n u rs e , G P, c o n c e rn s w a s m is s in g R a n d o m s a m p le o f re s p o n d e rs c o n v e n ti o n a l in te rv ie w e d (6 /2 1 p a ti e n ts h o s p it a l) a g re e d to b e in te rv ie w e d p lu s 3 re la ti v e s , 4 s ta ff , a n d 2 G P s ; n u m b e r a p p ro a c h e d n o t s ta te d ) J iw a , 2 0 0 6 2 6 N O R e p re s e n ta ti v e s fr o m s ix H o s p it a l B re a s t 3 fo c u s g ro u p s — O n ly lim it e d re s u lt s fr o m fo c u s g ro u p s p re s e n te d a n d lin k s U K s ta k e h o ld e r g ro u p s : G P s , p ra c ti c e (d is c u s s io n s 6 – 8 p a rt ic ip a n ts . N o m in a l b e tw e e n q u o te s a n d te x t n o t a lw a y s c le a r. R a ti o n a l fo r n u rs e s , b re a s t c a re n u rs e a b o u t e s s e n ti a l g ro u p — re p re s e n ta ti v e s re c ru it in g p a ti e n ts n o t re p o rt e d . S tu d y d id n o t s e e k to s p e c ia lis ts , o n c o lo g is ts , s u rg e o n s e le m e n ts fr o m fo c u s g ro u p s d e s c ri b e in d iv id u a l e x p e ri e n c e s a n d in s ig h ts ; fo c u s g ro u p s o r s p e c ia lis ts re g is tr a rs , a n d o f a m o d e l o f (N o t s ta te d ) u s e d to id e n ti fy b a rr ie rs to p ri m a ry c a re fo llo w -u p p a ti e n ts (n u m b e r o f p a rt ic ip a n ts p ri m a ry c a re (d e fi n it iv e lis t o f b a rr ie rs n o t re p o rt e d ) a n d n o m in a l g ro u p n o t s ta te d ) fo llo w -u p ) m e e ti n g s u s e d a s a p ro b le m s o lv in g e x e rc is e J o h a n s s o n , 2 0 0 0 2 7 Y E S — G P s ( n = 2 0 ). Ta k e n fr o m s a m p le In te g ra te d M u lt ip le S e m i-s tr u c tu re d te le p h o n e C h a ra c te ri s ti c s o f in c lu d e d G P s n o t d e s c ri b e d . D a ta N o rw a y In te rv e n ti o n + o f 1 0 0 G P s re p o rt e d a s b e in g h o s p it a l s it e in te rv ie w s a n a ly s e d q u a n ti ta ti v e ly . Ty p e a n d n u m b e r o f s ta ti s ti c a l c o n tr o l g ro u p p e rs o n a l G P s to a s e le c ti o n o f a n d G P (N o t s ta te d ) te s ts c a rr ie d o u t n o t s ta te d ; o n ly s ta ti s ti c a lly s ig n if ic a n t (e x te n d e d p a ti e n ts in c lu d e d in tr ia l; 8 3 re c e iv e d fi n d in g s re p o rt e d . D e fi n it io n o f s o m e c a te g o ri e s u n c le a r. in fo rm a ti o n to e x te n d e d in fo rm a ti o n fr o m s e c o n d a ry In te rv e n ti o n s ta rt e d a t ti m e o f d ia g n o s is , n o t fo llo w -u p G P s + h o s p it a l c a re a s p a rt o f in te rv e n ti o n a n d 1 7 fo llo w -u p h a d n o t. Te n p a ti e n ts in it ia lly s e le c te d v s h o s p it a l fr o m th o s e w h o h a d n o t re c e iv e d fo llo w -u p ) 5 3 in te rv e n ti o n , th e n 1 0 m a tc h in g G P s s e le c te d fr o m th o s e w h o re c e iv e d in te rv e n ti o n . 5 2 7 p a ti e n ts ra n d o m is e d a s p a rt o fo ri g in a l tr ia l, 4 2o f w h ic h 2 6 0 (4 9 % ) re p o rt e d a p e rs o n a l G P K o in b e rg , 2 0 0 1 2 9 Y E S — C o n tr o l P a ti e n ts ( n = 2 0 ) H o s p it a l B re a s t S e m i-s tr u c tu re d in te rv ie w s F a ir ly w e ll c o n d u c te d s tu d y. D iv e rs e , s tr a te g ic s a m p le u s e d , b u t n o t S w e d e n g ro u p o n ly 1 3 1 p a ti e n ts ra n d o m is e d to (P h e n o m e n o g ra p h y ) s ta te d h o w m a n y p a ti e n ts a p p ro a c h e d a n d d e c lin e d to p a rt ic ip a te . (P I-n u rs e c o n v e n ti o n a l h o s p it a l fo llo w -u p P ilo t in te rv ie w s u s e d to te s t re le v a n c e o f th e q u e s ti o n s a n d v a lid it y in v s h o s p it a l) 5 4 re la ti o n to a im s . H o w e v e r, a im s w e re to e x a m in e p a ti e n ts ’ s a ti s fa c ti o n a n d re s u lt s re la te d to p a ti e n ts ’ p e rc e iv e d n e e d s . R e s e a rc h e r w a s a n u rs e o n c o lo g is t, a n d n o t c le a r if th is w a s lik e ly to a ff e c t p a ti e n ts ’ re s p o n s e s . A n a ly s is c o n d u c te d b y th re e re s e a rc h e rs . K o in b e rg , 2 0 0 2 2 8 Y E S — In te rv e n ti o n P a ti e n ts ( n = 1 9 ) P I-n u rs e B re a s t S e m i-s tr u c tu re d in te rv ie w s S a m e c o m p a ra ti v e s tu d y a s a b o v e (K o in b e rg , 2 0 0 1 2 9) S w e d e n g ro u p o n ly 1 3 3 p a ti e n ts ra n d o m is e d to (P h e n o m e n o g ra p h y ) (P I-n u rs e v s h o s p it a l) 5 4 re c e iv e in te rv e n ti o n .. . c o n ti n u e d
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Systematic Reviews
P a rt o f R C T ? Ty p e o f C a n c e r S tu d y ty p e S tu d y a n d c o u n tr y (t ri a l re fe re n c e ) P a rt ic ip a n ts fo llo w -u p s it e (t h e o re ti c a l p e rs p e c ti v e ) C o m m e n ts M c Ilv e n e y, 2 0 0 4 3 0 N O P a ti e n ts ( n = 6 ) N u rs e (c lin ic ) B re a s t S e m i-s tr u c tu re d P o o rl y re p o rt e d . In te rv ie w s c o n d u c te d a n d a n a ly s e d b y s in g le re s e a rc h e r — U K H C P s ( n = 5 , fr o m (3 p a ti e n ts h a d in te rv ie w s b re a s t c a n c e r n u rs e s p e c ia lis t w h o m a n a g e d n u rs e -l e d fo llo w -u p c lin ic fr o m m u lt id is c ip lin a ry te a m ) a tt e n d e d n u rs e -(G ro u n d e d th e o ry ) w h ic h p a rt ic ip a n ts w e re re c ru it e d . N o m e a s u re s to a d d re s s p o s s ib ili ty o f b ia s le d fo llo w -u p , 3 re p o rt e d . P a ti e n ts re c ru it e d v ia a d v e rt p o s te d in o u t-p a ti e n ts ; n o t c le a r h o w n o t y e t a tt e n d e d ) p a rt ic ip a n ts s e le c te d o r h o w m a n y re fu s e d to p a rt ic ip a te . S o m e q u e s ti o n s in th e in te rv ie w s c h e d u le s n o t re p o rt e d in re s u lt s . In s o m e in s ta n c e s a s e ri e s o f q u o ta ti o n s w e re le ft to ‘s p e a k fo r th e m s e lv e s ’, th e a u th o r d id n o t s u m m a ri s e o r id e n ti fy th e p o in t b e in g m a d e M o o re , 2 0 0 6 3 1 Y E S — In te rv e n ti o n N u rs e s ( n = 2 p ro v id in g n u rs e -l e d N u rs e L u n g S e m i-s tr u c tu re d C h a ra c te ri s ti c s o f th e in c lu d e d n u rs e s a n d s tu d y c o o rd in a to rs n o t d e s c ri b e d , U K g ro u p o n ly fo llo w -u p ) a n d re s e a rc h (t e le p h o n e ) in te rv ie w s , n e it h e r w a s ro le o f s tu d y c o -c o o rd in a to rs . In te rv ie w s c o n d u c te d fa ir ly e a rl y (n u rs e -t e le p h o n e c o o rd in a to rs ( n = 2 ) 8 te a m m e e ti n g s o n in th e n e w ro le s o n u rs e s h a d lit tl e e x p e ri e n c e o f it ; q u a lit a ti v e in te rv ie w s v s h o s p it a l) 8 (N o t s ta te d ) c o n d u c te d 6 m o n th s a ft e r th e s p e c ia lis t n u rs e s s ta rt e d w o rk in g o n th e tr ia l w it h a n in it ia l 3 -m o n th tr a in in g p e ri o d P e n n e ry , 2 0 0 0 3 2 N O P a ti e n ts ( n = 2 4 ) H o s p it a l B re a s t S e m i-s tr u c tu re d P o o rl y re p o rt e d s tu d y. V e ry lit tl e in fo rm a ti o n g iv e n a b o u t th e q u a lit a ti v e U K P a ti e n ts s e le c te d fr o m c lin ic lis t; in te rv ie w s a p p ro a c h a n d p ro c e s s u s e d . N o t c le a r h o w m u c h o f th e fi n d in g s w e re 2 4 /3 8 (6 3 % ) a g re e d to p a rt ic ip a te (P h e n o m e n o g ra p h y ) re s p o n s e s to c lo s e d q u e s ti o n s (a n d th e a c tu a l q u e s ti o n s u s e d w e re n o t re p o rt e d ). In te rv ie w s c o n d u c te d b y le c tu re r p ra c ti ti o n e r in b re a s t c a re a n d th e ir p o te n ti a l in flu e n c e d u ri n g q u e s ti o n n a ir e d e s ig n , d a ta c o lle c ti o n , a n d d a ta a n a ly s is w e re n o t e x a m in e d R o zm o v it s , 2 0 0 4 1 2 N O P a ti e n ts ( n = 3 9 ) H o s p it a l C o lo re c ta l In -d e p th P a ti e n ts re c ru it e d v ia G P s , h o s p it a l c o n s u lt a n t, a n d s u p p o rt o rg a n is a ti o n s to U K in te rv ie w s p a rt ic ip a te in a n in te rv ie w fo r th e D IP E x p ro je c t (a d a ta b a s e o f p a ti e n ts ’ (N o t s ta te d ) e x p e ri e n c e s ). N o t c le a r h o w m a n y p a ti e n ts re fu s e d to p a rt ic ip a te S a h a y, 2 0 0 0 3 3 N O P a ti e n ts ( n = 2 0 ) H o s p it a l C o lo re c ta l S e m i-s tr u c tu re d In te rv ie w s c h e d u le c o v e re d d ia g n o s is , tr e a tm e n t a n d c a re (n o t ju s t fo llo w -u p ). C a n a d a te le p h o n e N o ra ti o n a le g iv e n fo r s a m p le c h o s e n a n d n o in fo rm a ti o n g iv e n a b o u t th e in te rv ie w s . n u m b e r o f p a ti e n ts a p p ro a c h e d o r d e c lin e d (a n d re a s o n w h y ). N u m b e r o f (N o t s ta te d ) q u o te s w a s lim it e d a n d th o s e p re s e n te d w e re n o t id e n ti fie d . In te rv ie w s c h e d u le in c lu d e d in te re s ti n g q u e s ti o n s b u t fa r m o re th a n c o u ld b e c o v e re d in d e p th in a 1 -h o u r in te rv ie w . S o m e q u e s ti o n s m is s e d o r o n ly to u c h e d o n b ri e fly in a n a ly s is W o n g , 2 0 0 2 3 4 N O P a ti e n ts ( n = 4 1 ) H o s p it a l M u lt ip le F o c u s g ro u p s — A im s w e re to u n d e rs ta n d p a ti e n t e x p e ri e n c e s a s w e ll a s id e n ti fy c o n c e rn s , C h in a (H o n g K o n g ) s it e 4 – 7 p a rt ic ip a n ts le v e ls o f s a ti s fa c ti o n , a n d s o u rc e s o f d is s a ti s fa c ti o n w it h fo llo w -u p c a re , (N o t s ta te d ) b u t re s u lt s (a n d h o w d a ta a n a ly s e d ) fo c u s e d o n p a ti e n ts ’ c o n c e rn s . S a m p le s iz e w a s n o t ju s ti fi e d . P a ti e n ts re c ru it e d v ia n e tw o rk o f c a n c e r p a ti e n t s e lf -h e lp g ro u p s ; s a m p le b ia s e d to w a rd s a y o u n g e r a n d m o re k n o w le d g e a b le p a ti e n t g ro u p . N o t s ta te d h o w in d iv id u a l g ro u p s s e le c te d p a ti e n ts a n d if a n y d e c lin e d to ta k e p a rt . D a ta a p p e a rs to h a v e b e e n a n a ly s e d in ri g o ro u s w a y a n d c re d ib ili ty o f fi n d in g s a re d is c u s s e d . B u t in s u ff ic ie n t d a ta a re p re s e n te d to s u p p o rt th e fi n d in g s , s u c h a s n a rr a ti v e q u o te s W o o d , 1 9 9 6 3 5 N O O n c o lo g is ts ( n = 9 ) H o s p it a l M u lt ip le S e m i-s tr u c tu re d F a ir ly w e ll c o n d u c te d a n d re p o rt e d s tu d y. S a m p lin g m e th o d a n d s iz e c le a rl y C a n a d a s it e in te rv ie w s d e s c ri b e d a n d ju s ti fi e d , b u t n o t re p o rt e d h o w p a rt ic ip a n ts re c ru it e d o r h o w (P h e n o m e n o g ra p h y ) s tu d y e x p la in e d to th e m . D a ta c o lle c ti o n c a rr ie d o u t a p p ro p ri a te ly , b u t d e ta ils o f in te rv ie w g u id e (u s e d to re d u c e in te rv ie w e r b ia s ) n o t re p o rt e d . S u ff ic ie n t d a ta p re s e n te d to s u p p o rt fi n d in g s , b u t s o u rc e o f q u o te s n o t g iv e n . D IPE x = D a ta b a se o f In d iv id u a l P a ti en t E xp e rie n ce s (now ca lle d h ea lth ta lkon lin e: w w w .h ea lth ta lkon lin e. or g) . H os p ita l = c on ve n tio n a l c on su lt a n t-l ed h osp ita l foll ow -u p . HC Ps = h e a lt hc a re p rof es sion a ls. P I = p a tie nt in it ia ted . R C T = ra n d om ise d c on tr oll ed tr ia l.T
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R e fe re n c e nu m b e r a R es ear ch q u es ti o n 1 9 20 2 1 1 2 2 23 24 2 5 2 6 27 2 9 28 3 0 3 1 32 12 3 3 3 4 35 Di d th e a rt ic le d es c ri b e a n im p or tan t c lin ic a l p ro b le m e x a m ine d via ± + + + + + + + + ± ± + + ± + ± ± + + a cl e a rl y for m u lat e d q ue s tion ? W a s th e q u a lit at iv e a p p roa c h ap p ro p ria te ? + + + + + + + + + ± + + + + + + + + + S am p li n g m et h o d W a s th e s a m p lin g str a te gy c le a rly d e fin e d ? – ± ± + – ± + – ± ± ± ± ± + + + – + + W a s th e s a m p lin g str a te gy a n d s iz e ju sti fie d ? – ± – ± – ± + – – ± ± ± + + ± + – – ± W a s th e s a m p lin g str a te gy a p p rop ri a te? – – – + ± ? + – + + ± ± + + ± + ? ± + Is it c le a r w h y som e p a rt ic ip ant s c hos e n ot to ta k e p a rt ? – – ± ± – – ± – – NA – – – N A – – – – + H a ve th e ch a ra c te ris tic s o f in c lud e d su b jec ts b e en c le a rl y d e fi n e d ? – ± – ± – – + – – ± + + + – ± + + + ± Dat a co ll ect io n W a s th e s e ttin g ju st if ie d ? ± + ± + ? ± + ± + + + + + + + + ± + + W e re th e m e tho d s u se d fo r col le c tin g d at a d e sc rib e d in e no ug h d e ta il? ± + ± + ± – – – + ± + + + + – + ± – ± W e re th e d a ta colle c ti on m et ho d s re liab le a n d v er if ia b le ? ± + ± + ± – + ? + ± + ± – + + + + + + W er e ob se rv a tion s ta k e n in a ra n ge of c ir c um s ta nc e s – N A ? NA – ± + NA NA – – – ? – – + NA – NA (for e x a m p le , a t d if fe re n t tim e s) ? R el a ti o n s h ip b e twe en res ear ch er an d p ar ti c ip an ts W a s the re s e a rc h e r’ s p e rs p e ct ive /r ole d e s c ri b e d ? – – – – – – + – ± – + + – + ± – – – + W a s th e re s e a rc h e r’ s p e rs p e ct ive /r o le lik e ly to le ad to p o te nti a l ? ? – ? ? ? ± ? ± ? ± ± – – ± ? ? ? ± b ia s o r in flu en c e ? D o th e re se a rc h e rs s ta te h ow th e re se a rc h w a s e xp la in e d – + – ± – – + – – ± + + + ? – – ± – – to th e p a rt ic ip a n ts ? D at a an al y s is Is it c lea r h ow the c a te g or ie s /t h e m e s w e re d e rive d fr om th e d a ta ? – + ± + – – – ± + + + + ± + ± ± ± + ± W e re s te p s ta k e n to te st th e c re d ib ilit y of th e fin d in gs ? – – – ± – – – – – + ± ± – ± – + ? ± + W e re a ll th e d a ta ta k e n in to a c c ou n t in th e a n a lysi s? – + + ? ? ? ? ? ? ? + + – ? ? ? ? ? ? W e re n e ga tiv e or d is c re p an t resu lt s fu lly a d d re s se d , o r ju st ign o re d ? ? ? ? ? ? ? ± ? ? ? ? ? ? ? ? + – ? ± D o th e re su lt s a d d ress th e re se a rc h q u e sti o n ? + + + + ± + ± ± + + ± ± ± + + + ± + ± Is s u ff ic ie n t d a ta p re s e n te d to su p p o rt th e fi nd in gs ? ± + + + – – – – – ± ± ± + + ± + ± – ± D o th e re s e a rc he rs e xp la in h ow th e d a ta p re s e nte d in th e p a p e r w e re – – – – – – – – – ± + + – + – – – – – s e le c ted fr om the o ri g ina l s a m p le ? Is it p ossib le to d e te rm in e th e sou rce s o f d a ta p re se n te d ? + + + + – – – + + – ± – + + + + – – – C o n c lu s io n s A re th e c on c lu si on s ju s tif ie d b y th e re su lt s ? ± ± ± + ± ? ± ± + ± ± ± + + ± ± + ± ± Ha v e a lt e rn a tive e x p la na ti on s for th e re s ul ts b e e n e x p lo re d a n d – – ± – – – – – – ± ± ± – – ± ± – – – d isc ou n te d ? W e re th e lim ita tion s of th e s tu d y d isc us s e d ? – + ± – – – – – + ± ± – ± + – – – + – A re th e fin d in gs o f th e stu d y tr a nsf e ra b le to ot h e r c lin ic a l se tt in gs? ? ? ± ? – ? – ? – ± – – ? – ± ? ? – + + it e m p ro p e rly a d d re sse d ; ± it e m p a rt ia lly a d d re sse d ; – ite m not p rop e rl y a d d re s s e d ; ? U nc le a r/ c a n’ t tel l/ n ot s ta ted ; NA Not a p p lica b le .
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professionals felt that patients expected tests and examinations, and were difficult to reassure without them.1,26For some patients an increase in the interval between appointments was seen as a positive sign,1,32and anxiety diminished over time,23but, for others, anxiety persisted20,23,26and even increased as the interval lengthened.1,23
Specialist knowledge and quick access to tests were thought to be the most important ingredients of follow-up, and were key concepts of alternative models. Access to expertise, including a team of specialists with associated technology, engendered confidence in patients and relatives and was the main advantage of hospital-based follow-up.19,22,25,32 Patients’ antagonism towards alternative models was largely associated with concerns that it would be difficult to re-access specialist facilities quickly if required.22GPs were considered by patients,12,19,23,32,33 and oncologists35 to lack specialist knowledge for undertaking follow-up, identifying and treating recurrence, or even supporting patients between hospital appointments. However, GPs thought this was not a barrier to involvement as they could get information from specialists when needed.21Cancer
specialist nurses were seen to be less
knowledgeable and experienced than doctors, but had quick access to medical back up when necessary.25,26
Information regarding the effectiveness of follow-up (tests and examinations) was not given to patients. Healthcare professionals admitted that patients were given little or no explanation of follow-up and thought patients would be more likely to accept alternative models if they were fully explained.25,26Patients were unaware of flaws in conventional hospital follow-up. Inconsistencies in surveillance protocols between doctors and hospitals confused and worried
them.22,34 Tests and examinations appeared to
provide tangible evidence of freedom from
disease,12,19,23,25,29 and radiological tests were considered to be particularly reliable by patients.20,23,25 However, healthcare professionals acknowledged that examinations were unlikely to detect recurrence in patients who were symptom-free.1,26
Patients lacked clear information that could aid coping and enable involvement. Patients obtained information from various sources (friends and family,33internet and support groups,12,33GPs,33and hospital1,33,34), but still had unmet needs.12,19,21,25,28,29,32–34 Appropriate information reduced anxiety,23provided reassurance,23 helped them cope,23,34 and enabled involvement.33,34 However, many were dissatisfied
with the limited information given in
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Systematic Reviews
1. Patients should be given full and clear information using plain language on the following:
씰 effectiveness of different tests and examinations in detecting recurrence;
씰 risk of recurrence and what they can do to reduce this;
씰 potential side-effects of treatment and how to deal with them;
씰 signs and symptoms of potential recurrence and what to do if these are experienced; and
씰 alternative models of follow-up that may be available.
2. A follow-up care plan which has been negotiated with the patient/carer should be set up for each patient on completing treatment, including the patient’s preferred model of follow-up. Generally, patients’ main concern is fear of recurrence and many find regular follow-up reassuring.
3. Healthcare professionals should provide sufficient time and encourage patients during follow-up to raise questions and concerns.
4. Psychological support should be an integral part of follow-up, especially during the initial stages.
5. Tests and examinations should not be conducted purely for reassurance, but only where there is a reason or the evidence base to support their use; and this must be explained to the patient/carer.
6. Patients should be given contact details of a key person whom they can contact when needed and who can provide them with support and continuity of care.
7. Multidisciplinary teams should include representation from primary care (but this does not have to be the individual patient’s GP or someone from the patient’s practice)
8. There needs to be a formal handover and exchange of information between primary and secondary care. This should include complete discharge information and exchange of contact details (hospital clinicians to GPs and vice versa).
9. As an adjunct to routine hospital follow-up, a member of the primary care team should make contact with the patient immediately after hospital discharge to discuss the type of support that primary care could offer. 10.Patients should be given informed choice about whether to attend
scheduled appointments or just when they have problems or symptoms (patient-initiated).
11.If alternative models of follow-up (for example, primary care, nurse, or patient-initiated follow-up) are to be developed and tested in further research, then these models should:
씰 include a system of rapid referral for investigations (to be explained to patients);
씰 include training/education for GPs, nurses, and other healthcare professionals;
씰 include support from specialist team at hospital (or medical support for alternative models set up in secondary care);
씰 be established with the collaboration of the whole cancer team and primary care from the outset; clear protocol/guidelines should be agreed by all parties in advance; and
씰 enable individual GPs (for primary care follow-up) to be able to opt out; alternative primary care-based follow-up should be provided if the patient wishes this.
12.The role of cancer support groups needs to be explored further.
Box 1. Recommendations for policy and practice derived
from descriptive themes.
consultations,12,19,21,25,28,29,32–34 or felt advice was
inappropriate.12Patients had difficulty understanding medical terminology and thought technical language was sometimes used as an excuse not to provide adequate information.33,34 Clinic nurses interpreted information for patients.1Some patients felt inhibited about asking questions.32,33Some patients perceived that more information was given to patients who
were better educated,34 or asked the right
questions.33,34
Continuity of care and unhurried consultations were of major importance to patients.A good relationship with the healthcare professional was valued by patients, and continuity of care (seeing the same person) was key to this.19–21,25,29,30,32,34 Patients appreciated being seen by someone familiar who knew their case.12,32 Having contact details of healthcare professionals was considered important and reassuring.12,25,32Lack of continuity was a barrier to good communication.30,34 Patients found that nurses were easier to talk to than doctors and had more time.25,30The system of rotating junior doctors interrupted continuity,34and there was no time during consultations to raise concerns or questions.1,19–21,32,33 Psychosocial support was important because of the impact of cancer on patients’ lives (for example, social, domestic, economic) but was under-provided. Psychosocial support was very important to patients,20,22,23,28,29,33 but patients and healthcare professionals agreed that there was not enough time for it in conventional follow-up.1,20,32 Some support could be provided by family and friends,20,23,29 although some people were reluctant to burden them.33Some found GPs helpful,12,33although others lacked confidence in them to provide support.22 Specialist nurses had more time for psychosocial support than doctors, and were particularly effective in providing it.12,25,31,32
Patients were reluctant to use their GP for cancer-related support (in between hospital visits).While a few GPs were keen to participate in cancer care,21 and some patients received valuable support,12,33 many patients thought GPs were too busy,22,32lacked knowledge,23,25,33 or were not interested in cancer care.12,22Some GPs were understanding and helpful, but patient–GP relationships could be undermined by problems during diagnosis and initial referral,12or by lack of rapport.22
There were significant communication problems, in both directions, between primary and secondary care, which hindered GPs’ ability to provide support. Multidisciplinary teams were thought to be very
important and to work well in the hospital setting,25,35 but the absence of a primary care representative was thought a weakness.35GPs felt uninformed, and a formal handover with exchange of information at the time of patients’ discharge from hospital was identified (by GPs and hospital doctors) as most important.21,26,27,35 In an RCT, GPs who were given more information by the hospital felt more able to be involved in follow-up, to determine patients’ needs, and to offer support.27 Oncologists felt that they were not kept informed by GPs and thought the large number of GPs, their varied level of commitment and knowledge, lack of time, and difficulties in contacting them were barriers to collaboration between specialists and primary care.35Patients’ preferences for either hospital or GP follow-up were also seen to be detrimental to collaboration and a team approach.35
Cancer specialist nurse-led follow-up could benefit patients but some healthcare professionals lacked confidence in it.Patients had confidence in nurse-led follow-up, and women especially were thought to be more comfortable with female nurses, but some healthcare professionals did not think nurses were
experienced enough.30 A newly set-up nurse-led
telephone follow-up service was seen by specialist nurses to provide effectively planned and managed care in a more supportive environment that allowed more involvement of the family in care.32However, the nurses experienced hostility and lack of support from hospital staff, and it took time for them to become confident in their role and to earn the respect of other colleagues.31
Some thought that nurse-led follow-up was inappropriate and that nurses were not skilled enough to deal with the medical interventions and palliative care required by lung cancer patients.31 Nurses reported that the role carried an enormous emotional burden and that they needed supervision and support, but that it was immensely satisfying.31 Clinic staff thought that nurse-led follow-up for lung cancer could free up doctors’ time for patients with medical needs, while patients thought it could give access to expertise more quickly than conventional follow-up.25 Clinical staff identified the essential requirements for nurse-led follow-up (for lung cancer patients) as: clear protocol and guidelines, access to medical back-up, and training.25
GPs were not thought to be willing or to have sufficient expertise to conduct primary care follow-up. Patients lacked confidence in GPs to provide follow-up, and those attending conventional hospital follow-up chose GP-led follow-up as their least
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conventional, telephone, and GP follow-up).22,25 Patients thought GPs would be unwilling to provide follow-up,12,22 and healthcare professionals thought they would need additional training first.26 Key stakeholders thought that the essential requirements for primary-care follow-up (for breast cancer patients) included formal handover from secondary care with a detailed case summary, a protocol for re-referral to specialists, access to investigations, and referral to a specialist counsellor.26,27There was no consensus on whether patients should have regular follow-up appointments or make an appointment when symptoms or concerns arose.26,29
Patient-initiated follow-up was convenient but less reassuring. Some patients preferred the flexibility of patient-initiated follow-up, but others preferred regular appointments,29,32 in some cases because they feared they would put off or fail to make an appointment.23,32
DISCUSSION
Summary of main findings
Twelve descriptive themes were identified. Fear of recurrence was the main concern for patients, which was temporarily alleviated by attending routine follow-up with cancer specialists. Information regarding the limitations of routine hospital follow-up (or lack of effectiveness of examinations and tests) was not conveyed to patients, who also had unmet needs for information, which would help them cope and be more involved.
Continuity of care, unhurried consultation, and psychosocial support were important to patients. The expertise of hospital specialists and quick access to tests were highly valued, but time, emotional support, and continuity of care were sometimes lacking in routine hospital follow-up. Patients were reluctant to use their GP for cancer-related support in between hospital visits, and GPs were thought to be unwilling or to have insufficient time and expertise to provide follow-up. There were
significant communication problems between
primary and secondary care, in both directions. Specialist nurses were considered more supportive than doctors, and patients were satisfied with nurse-led follow-up but other health professionals lacked confidence in it. Patient-initiated follow-up was more convenient but less reassuring.
From the descriptive themes, 12 perceived implications for policy and practice were derived. Improved patient information is needed, which would help them to cope and be more involved as well as enable them to make informed choices about the type of follow-up support they need. Patients valued regular follow-up by specialists to allay fears of
disease recurrence. Psychological support should be an integral part of follow-up, and sufficient time and encouragement should be given for patients to raise
concerns and ask questions. Improved
communication between primary and secondary care should be established from the outset, with a formal handover and exchange of information at discharge. The availability and type of primary care support (as an adjunct to routine hospital follow-up) should be conveyed to patients. Alternative models of follow-up should be established with the support of the whole cancer team (including input from primary care), and include training and educational support, and quick access to specialist tests. Strengths and limitations of the study
The literature search was comprehensive, but it was carried out separately for each cancer site, rather than using generic cancer terms. Although the searches identified studies evaluating multiple cancer sites, it is not possible to be certain that none was missed, especially studies examining cancer survivorship among children or young adults, which did not specify the cancer site. The quality of included studies varied, with many being poorly reported. However, there is debate about the use of quality-assessment tools for appraising qualitative
studies.40–42 The included studies were
heterogeneous in terms of population studied, underlying theory used, and methods of data collection. Although there is some controversy about the value of combining the findings from studies using different methods or informed by different
theories of knowledge,43,44 this enabled the
researchers to identify a range of common themes. Most included studies were related to conventional follow-up in secondary care, which was the type of follow-up that most had received. Some of the views expressed concerning other models of care were based on participants’ ideas, rather than their experiences. The search only included qualitative
studies rather than quantitative surveys of
participants’ views, because the views expressed were more likely to reflect those of the participants rather than any perceived views or beliefs of the researchers. It must be acknowledged that there is a minor limitation that the potential prevalence of these views and themes was not estimated.
The recommendations for policy are based on an evaluation that goes beyond the findings of the primary studies, and as such their development was dependent on the judgement and insights of the reviewers and their knowledge of relevant literature from different sources. They were generated using the same underlying rigorous process as the
descriptive themes; accordingly, they are presented within the results rather than the discussion. The recommendations were initially developed by two independent reviewers who are not clinicians. They were then checked and commented on by two further independent reviewers, one of whom is a practising GP and the second a consultant oncologist.
Comparison with existing literature
The authors are not aware of any other systematic reviews that summarise the findings of peoples’ views on cancer follow-up.
Implications for future research and clinical practice
Patients wanted regular consultations with cancer specialists, tests, and examinations to allay fears of
disease recurrence. Healthcare professionals
admitted that patients were given little or no explanation about follow-up, and patients felt that appropriate information could help them to cope and would enable involvement.
The evidence regarding the effectiveness of follow-up should be discussed with patients, as well as their own personal risk of recurrence including advice on what they can do, if anything, to reduce this risk (for example, there is evidence that exercise and a reduced-fat diet can reduce the risk of breast cancer recurrence45–47). In a survey of 156 colorectal cancer patients attending routine hospital follow-up, only 22% could identify risk indicators for recurrence, while 64% said they would like to be told what to look for.48
Patients may also benefit from education and information on how to cope psychologically, and self-management strategies for common problems. The opportunities for patients to participate actively in their own post-treatment care were not discussed in any of the primary studies, nor how such opportunities could be built into any model of cancer follow-up.
To enable comprehensive patient care and for patients to have the support they need, improved communication between primary and secondary care is needed in both directions, irrespective of the type of follow-up used. National Institute for Health and Clinical Excellence guidance on breast and
colorectal cancer recommends that the
multidisciplinary team responsible for the patient should maintain close contact with GPs and primary care teams,49,50 and should take responsibility for passing clinical information in a timely manner to the GP, irrespective of the type of follow-up. Having a GP with a special interest in cancer as a member of the
multidisciplinary team, who could act as a
representative or spokesperson for primary care, could be beneficial.
Most of the qualitative studies included patients who had not experienced alternative types of follow-up; they were mainly patients who had recently
completed treatment or who had received
conventional hospital follow-up. More qualitative
studies are needed of patients who have
experienced other forms of follow-up. Further research specifically focusing on preferences and experiences (as opposed to views and attitudes) would also be welcomed in this topic. More qualitative studies are also needed of cancer sites not covered by included studies.
Further research is needed to evaluate whether patients’ preference for routine follow-up is changed if they are given clear information about the effectiveness of diagnostic tests and investigations, their risk of recurrence, how to recognise signs and symptoms of recurrence, and any preventative measures they could take. Patients value the psychological support provided by routine hospital follow-up. Further research is needed to assess the type of psychological support that patients want or need, and how best to provide this within the context of alternative models of follow-up.
Funding body
Cancer Research UK (Ref C8350/A4543). The funding source had no involvement in the study
Ethical approval
Ethical approval was not required
Competing interests
The authors have stated that there are none
Acknowledgments
We would like to thank Stephen Duffy for his advice on searching databases and developing the search strategy, Bernadette Coles and Hilary Kitcher for checking some of the original search strategies, Madeline Pasterfield and Jennifer Wilkinson for technical support including carrying out the update searches, and Alison Eastwood for peer reviewing the protocol and draft final report. We would also like to thank the following people for sending us further information about the studies they had conducted: Kinta Beaver, Gillian Knowles, Karen Cox, Christine McIlvenney, and Stephen Barclay. Thanks also to Richard Bailey and his staff at the John Spalding Library for their help in retrieving manuscripts.
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