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Cancer follow-up places a significant burden on hospital outpatient clinics. There are increasing calls to develop alternative models of provision.
To undertake a systematic review of qualitative studies examining patients' and healthcare professionals' views about cancer follow-up.
Primary and secondary care.
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.
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.
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.
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.1–6 Consequently, 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 more responsibility for their own care,9 and 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
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.
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.
Review of people's views was carried out using the method reported by Thomas and Harnden,15 and Harden et al,16 which 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 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 Thomas et al.15 The 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.
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, Lewis et 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.36,37 Two 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,1,19,20,22,24,26,28–30,32 four multiple cancer sites,21,27,34,35 two colorectal,12,33 two lung,25,31 and one study evaluated gynaecological cancers.23 Eight studies examined the views of healthcare professionals,1,21,25–27,30,31,35 four of which examined the views of GPs.21,25–27 Sixteen 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.12,21 The 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 Canada33,35 and 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,1 focus 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.
Twelve descriptive themes were identified; these were interpreted to develop a list of 12 recommendations for policy and practice (Box 1).
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
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 professionals felt that patients expected tests and examinations, and were difficult to reassure without them.1,26 For some patients an increase in the interval between appointments was seen as a positive sign,1,32 and anxiety diminished over time,23 but, for others, anxiety persisted20,23,26 and even increased as the interval lengthened.1,23
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.22 GPs 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.21 Cancer specialist nurses were seen to be less knowledgeable and experienced than doctors, but had quick access to medical back up when necessary.25,26
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.25,26 Patients 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 obtained information from various sources (friends and family,33 internet and support groups,12,33 GPs,33 and hospital1,33,34), but still had unmet needs.12,19,21,25,28,29,32–34 Appropriate information reduced anxiety,23 provided reassurance,23 helped them cope,23,34 and enabled involvement.33,34 However, many were dissatisfied with the limited information given in consultations,12,19,21,25,28,29,32–34 or felt advice was inappropriate.12 Patients 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.1 Some patients felt inhibited about asking questions.32,33 Some patients perceived that more information was given to patients who were better educated,34 or asked the right questions.33,34
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.12,25,32 Lack 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.25,30 The system of rotating junior doctors interrupted continuity,34 and there was no time during consultations to raise concerns or questions.1,19–21,32,33
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.33 Some found GPs helpful,12,33 although 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
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,22,32 lacked knowledge,23,25,33 or were not interested in cancer care.12,22 Some GPs were understanding and helpful, but patient–GP relationships could be undermined by problems during diagnosis and initial referral,12 or by lack of rapport.22
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.35 GPs 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.35 Patients' preferences for either hospital or GP follow-up were also seen to be detrimental to collaboration and a team approach.35
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.32 However, 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
Patients lacked confidence in GPs to provide follow-up, and those attending conventional hospital follow-up chose GP-led follow-up as their least preferred option from four models (nurse, 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.26,27 There was no consensus on whether patients should have regular follow-up appointments or make an appointment when symptoms or concerns arose.26,29
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.
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 inductive analysis and development of 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.
The authors are not aware of any other systematic reviews that summarise the findings of peoples' views on cancer follow-up.
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.
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.
Cancer Research UK (Ref C8350/A4543). The funding source had no involvement in the study
Ethical approval was not required
The authors have stated that there are none
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