Background
Since 2011 in London, UK and 2014 in Greater Manchester, UK, cancer care has been provided in integrated cancer systems in which a group of providers come together in a formal way to provide comprehensive cancer care. More recently, these integrated systems are working towards further centralisation of specialist surgical pathways for several cancers, including prostate, bladder, kidney, and oesophago-gastric (OG) cancers, so that specialist complex interventions within these services are provided in fewer hospitals. Implementation of the London Cancer centralisations was completed in April 2016, and implementation of the Greater Manchester Cancer centralisations is planned for 2017.
Before these most recent changes, potential cancer surgery patients were either referred to their local hospital or the designated specialist service of their cancer network for diagnosis, and either remained there or were referred to a more specialist hospital. The care received by patients and patient volume varied across specialist centres. In the London Cancer integrated system (covering a population of 3.2 million in North Central London, North East London and West Essex), patients with prostate and bladder cancer requiring treatment by radical surgery only received robotic surgery in certain specialist centres; the majority of patients requiring surgery for renal cancer underwent surgery in a local non-specialist hospital (performed by a specialist or general urologist), rather than a specialist centre; and patients with OG cancers having major surgery were not guaranteed to see a specialist out of hours or at weekends. These pathways have been reconfigured so that the majority of patients who require them receive specialist surgical services in one specialist hospital in the case of renal, prostate, and bladder cancer and in one of two hospitals in the case of OG cancer.
In the Greater Manchester Cancer network (covering a population of 3.1 million in Greater Manchester and East Cheshire), the reconfiguration of specialist surgery is in the design stages and has not yet been implemented. A degree of existing specialisation exists with 3–5 centres offering specialist surgery for each of the described cancer pathways with the plan to move to a model where 1–2 centres provides these in 2018.
Research suggests there is an association between higher volume and better outcomes in many clinical settings [
1]. For example, recent research has indicated that centralising acute stroke services into a smaller number of high-volume units is associated with significantly better provision of evidence-based clinical interventions [
1], and significantly better clinical outcomes, including patient mortality [
2]. Higher volume is associated with better outcomes in specialist surgery for OG cancers [
3] and urological cancers [
4]. There are longstanding recommendations to implement centralisation of specialist services [
5‐
8], citing potential to increase patient volumes, reduce variations in access, and improve patient outcomes by increasing the likelihood of patients receiving care in hospitals that have a full range of experienced specialists and services to support provision of care.
It has been suggested that among the advantages of a centralised cancer surgery system is the increased patient volume that permits greater specialisation of staff, and greater experience and expertise across teams [
9]. Also, under centralised systems specialist services may offer a full range of surgical technologies (e.g. robotic surgery), and equal access to innovative techniques, such as less invasive procedures [
10,
11]. Much of the care is still likely to be provided by local hospitals, including diagnosis and ongoing radiotherapy and chemotherapy, with only complex surgery or other interventions (e.g., brachytherapy and cryotherapy) likely to be provided at the specialist centre [
12]. Post-centralisation, local hospitals may have closer involvement with specialist centre staff, e.g. joint multi-disciplinary teams (MDTs), and specialists providing training and delivering some outpatient care, with the potential to improve quality of care across the whole system [
11,
13]. Possible disadvantages of centralisation are that it is likely to lead to an increase in travel demands on patients and families, and thus may limit people’s access to quality care [
14] and to support from family and friends while undergoing specialist surgical treatment.
Little is known about the preferences of patients, the public and health professionals in relation to centralisations of this kind. A review of research evidence indicates that patients are more willing to travel for a number of reasons: to see a specialist; to a hospital with a good reputation; if a condition is serious or urgent; or if the patient is of a higher socioeconomic status. In contrast, older patients and frequent users of services are less willing to travel further, and preferences vary according to the length and inconvenience of the journey [
15,
16].
Aligning major system change with stakeholder preferences is likely to increase the likelihood of successful implementation and ongoing sustainability of the changes [
17]. This is especially relevant when deciding what changes to implement and how to implement them [
17]. Therefore, the aim of this study is to examine the factors that matter to patients and carers and health professionals about the centralisation of specialist surgical services and how these factors vary among different stakeholder groups. The results of this study will subsequently inform a discrete choice experiment that will evaluate how individuals trade off selected attributes of the service [
18].
The study is part of a larger project, “Reorganising specialist cancer surgery for the 21
st century: a mixed methods evaluation (RESPECT-21)”, that analyses the centralisation of specialised cancer surgical services in the areas covered by
London Cancer and
Greater Manchester Cancer [
19]. The larger study will address gaps in the evidence about the centralisation of these services, including processes, impact, and cost-effectiveness of changes, as well as identifying lessons that will guide centralisation work in other areas of specialist services (NIHR study reference 14/46/19). The larger study uses a conceptual framework designed to understand the key processes involved in major system change (Additional file
1). These processes include: making the decision to change, developing and agreeing new service models, implementing the changes, and adhering to the new model [
19]. Stakeholder preferences, considered in this study, might be especially important during early stages of major system change such as making the decision to change and deciding on which service model to implement.
Results
We received 52 responses (overall response rate 52/186 = 28%): 19 responses from PPI groups (19/126 = 15%) and 33 responses from HCP groups (33/60 = 55%). Table
1 provides details of the participants’ characteristics categorised by sub-group and location.
Table 1
Characteristics of survey participants
Sub-group |
PPI | 11 | 8 | 19 |
HCP | 5 | 28 | 33 |
PPI sub-group |
Patient | 10 | 6 | 16 |
Carer | 1 | 1 | 2 |
Not answered | 0 | 1 | 1 |
HCP sub-group |
Clinical nurse specialist | 2 | 2 | 4 |
Dietician | 2 | 0 | 2 |
Surgeon | 1 | 5 | 6 |
Radiologist | 0 | 2 | 2 |
Oncologist | 0 | 5 | 5 |
Other | 0 | 4 | 4 |
Not answered | 0 | 10 | 10 |
From the responses received for each group (Additional file
3), we sorted factors by equal-weighted importance (Table
2) and rank-weighted importance (Table
3). Focusing on rank-weighted importance as our preferred measure, on aggregate across all respondents the most important factors affecting preferences for centralisation of specialist cancer surgical services were highly trained staff, likelihood and severity of complications, waiting time for surgery for cancer, and access to staff members from various disciplines with specialised skills in cancer. These were the most important factors for both the PPI and HCP sub-groups, though in a slightly different order. The least important rank-weighted factors overall and in each of the sub-groups were: indirect effect on non-cancer surgical services, number of surgical staff in local area, training opportunities for surgical staff and number of centres in the local area. Results were similar for the equal-weighted ranking with highly trained staff, likelihood and severity of complications, waiting time for surgery for cancer, and access to staff members from various disciplines with specialised skills in cancer all being judged as most important by the HCP sub-group and three of these measures being judged most important by the PPI sub-group (likelihood and severity of complications was ninth most important). At the other end of the ranking, similar factors were also least important, with the exception that for HCP respondents travel time to the hospital was one of the least important attributes and training opportunities for surgical staff were not in the bottom four attributes.
Table 2
Equal-weighted ranking of factors (1 = highest ranked, 16 = lowest ranked)
1 | Waiting time for a surgery | Access to staff members from various disciplines with specialised skills in cancer | Waiting time for a surgery |
2 | Highly trained staff | Highly trained staff | Highly trained staff |
3 | Access to most up-to-date facilities and equipment | Waiting time for a surgery | Access to staff members from various disciplines with specialised skills in cancer |
4 | Core specialist team working 24/7 | aLikelihood and severity of complications | Core specialist team working 24/7 |
5 | aReadmissions to hospital | aCore specialist team working 24/7 | Access to most up-to-date facilities and equipment |
6 | aAccess to staff members from various disciplines with specialised skills in cancer | Access to most up-to-date facilities and equipment | aLikelihood and severity of complications |
7 | Number of specialist cancer surgical procedures | aNumber of specialist cancer surgical procedures | aReadmissions to hospital |
8 | Participation in clinical trials | aReadmissions to hospital | Number of specialist cancer surgical procedures |
9 | Likelihood and severity of complications | Training opportunities for surgical staff | Participation in clinical trials |
10 | Probability of dying from cancer | Participation in clinical trials | aProbability of dying from cancer |
11 | Travel time to hospital | Length of stay at hospital | aTraining opportunities for surgical staff |
12 | aLength of stay at hospital | aProbability of dying from cancer | Travel time to hospital |
13 | aNumber of surgical staff in local area | aIndirect effect on non-cancer surgical services | Length of stay at hospital |
14 | aIndirect effect on non-cancer surgical services | Travel time to hospital | Indirect effect on non-cancer surgical services |
15 | Number of centres in the local area | Number of surgical staff in local area | Number of surgical staff in local area |
16 | Training opportunities for surgical staff | Number of centres in the local area | Number of centres in the local area |
| Kappa = 0.1145 | Kappa = 0.1430 | Kappa = 0.1295 |
Table 3
Rank-weighted ranking of factors (1 = highest ranked, 16 = lowest ranked)
1 |
Highly trained staff
|
Highly trained staff
|
Highly trained staff
|
2 |
Waiting time for a surgery
|
Likelihood and severity of complications
|
Likelihood and severity of complications
|
3 |
a
Likelihood and severity of complications
|
Access to staff members from various disciplines with specialised skills in cancer
|
Waiting time for a surgery
|
4 |
a
Access to staff members from various disciplines with specialised skills in cancer
|
Waiting time for a surgery
|
Access to staff members from various disciplines with specialised skills in cancer
|
5 | Core specialist team working 24/7 | Number of specialist cancer surgical procedures | Core specialist team working 24/7 |
6 | Access to most up-to-date facilities and equipment | Core specialist team working 24/7 | Number of specialist cancer surgical procedures |
7 | Number of specialist cancer surgical procedures | Readmissions to hospital | Readmissions to hospital |
8 | Probability of dying from cancer | Probability of dying from cancer | Probability of dying from cancer |
9 | Readmissions to hospital | Participation in clinical trials | Access to most up-to-date facilities and equipment |
10 | Travel time to hospital | Access to most up-to-date facilities and equipment | Participation in clinical trials |
11 | Length of stay at hospital | Travel time to hospital | Travel time to hospital |
12 | Participation in clinical trials | Length of stay at hospital | Length of stay at hospital |
13 |
Indirect effect on non-cancer surgical services
|
Number of surgical staff in local area
|
Indirect effect on non-cancer surgical services
|
14 |
Number of centres in the local area
|
a
Training opportunities for surgical staff
|
Number of surgical staff in local area
|
15 |
Training opportunities for surgical staff
|
a
Indirect effect on non-cancer surgical services
|
Training opportunities for surgical staff
|
16 |
Number of surgical staff in local area
|
Number of centres in the local area
|
Number of centres in the local area
|
| Kappa = 0.0114 | Kappa = 0.0281 | Kappa = 0.0278 |
The kappa statistics overall and for each sub-group were in the range 0.1145 to 0.1430 for the equal-weighted results and 0.0114 to 0.0281 for the rank-weighted results, representing ‘slight’ agreement among rankers in each case [
27]. This indicates that, while the top- and bottom-ranked factors overall and in each of the two subgroups were similar, there was considerable heterogeneity regarding the precise ordering of factors within sub-groups and overall.
While the top and bottom four factors were similar for each sub-group, there was more heterogeneity in the ordering between sub-groups with the other factors. The probability of dying from cancer was in this middle group of factors indicating it was less important than the four most important factors described above. Travel time to the hospital was not ranked highly by either sub-group, though as noted this has been raised as a possible negative consequence of centralisation.
Participants were invited to suggest additional factors that were important to them. Three additional factors were suggested, each raised by one participant each (all from the PPI sub-group): availability of free or cheap accommodation for patients and carers; availability of cheap and easy-to-use transport to get to the hospital for patients and carers; and, availability of clear and detailed information for patients and carers about the surgery and follow-up care.
Discussion
Summary
This study explored factors influencing preferences for centralisation of specialist cancer surgical services among patients, carers and health care professionals in England. Our results suggest the following factors were ranked as most important:
-
Having highly trained staff (including surgeons, other doctors and nurses), which may improve outcomes from surgery and reduce the chances of surgical complications.
-
Likelihood and severity of complications from surgery that may negatively affect health and increase the length of stay in hospital.
-
Waiting time from referral to surgery to having the surgical procedure.
-
Having access to staff members from various disciplines (nursing, physiotherapy, dietetics, psychosocial support, radiology, pathology) with specialised skills in cancer surgery to better manage the whole process from start to end.
We found that different stakeholder groups identified similar factors as being important to them, suggesting that overall patients and carers, and health care professionals, have similar interests and concerns about centralisation. However, while on aggregate similar factors were important to each sub-group, there was considerable within-group and overall heterogeneity in the precise ordering of factors.
As well as identifying factors important to stakeholders when considering centralisation of specialist cancer surgery, this study also identifies factors perceived as being less important by the sample of respondents that might be affected by the reorganisation, including indirect effect on non-cancer surgical services, number of surgical staff in local area, training opportunities for surgical staff and number of centres in the local area. Previous research on the centralisation of cancer services has identified the distance to hospital and travel time as a limiting factor in patients’ decisions to access treatment, especially in the case of patients living in socioeconomically deprived areas [
21]. However, the findings of our study seem to support other studies on this topic that found that patients are willing to travel for specialist care [
16,
28]. It is important to note that the questionnaire did not ask participants to specifically consider the importance of travel costs, though this will be related to travel time. In addition, travel cost was not raised as a separate issue when participants were given an option to add items to the original list of 16.
Strengths and limitations
This study has two main strengths. First, the survey questionnaire was rigorously designed, pre-tested, checked for English language problems and is based on a detailed review of planning documents about the centralisations. Second, and to our knowledge, this is the first survey attempting to identify factors related to the centralisation of specialist surgical services that are important to patients, the public and health care professionals.
The main limitations of our study are the small sample size and use of convenience sampling. The survey included only 52 respondents from London and Greater Manchester, and while there were similarities between groups in terms of the ranking of factors, the small sample size and restricted geographical coverage is likely to limit the extent of heterogeneity in responses as well as the generalisability of the findings. Further, the response rate was only 28%. This was mainly driven by the low response rate to the email invitation to participate in the survey (7%); when potential participants were asked to participate face-to-face the response rate was much higher (63%). Another limitation is that we did not collect information on socioeconomic status in the PPI sub-group or age of any of the research participants, to examine how these variables could have influenced the ranking of the factors. We also acknowledge there is likely to be some overlap in the variables included in the analysis (e.g., likelihood and severity of complications and having highly trained staff), though this is not a limitation of the analysis since, while inter-related, the variables capture different attributes of service provision.
Implications
There are two implications of our study. First, planners who are redesigning services might consider and measure the impact of the reorganisation on the factors identified as being important in this study. Second, they should also disseminate information about these factors to patients, the public and health care professionals when deciding whether or not and how to centralise specialist cancer surgical services. Stakeholder preferences might be especially important during early stages of major system change such as making the decision to change, deciding on which service model to implement, and deciding how to implement the changes (Additional file
1).
Further research
Further research would be beneficial, repeating this exercise with a larger sample of respondents in different geographical areas, and using face-to-face methods to approach potential participants where possible to maximise responses. Sampling should also include the general public as well as patients and carers and health care professionals, and be undertaken in areas where less centralisation-related activity has taken place. Also, while according to this study there may be agreement between different groups about which are the most important factors affected by centralisation, the relative strength of preference for these factors might vary. Therefore, the results of this study will inform a discrete choice experiment, which will explore strength of preferences for how services are organised for patients, the general public, and healthcare professionals, and how these stakeholders value selected factors.
Acknowledgements
We thank Ruth Boaden, Veronica Brinton, Neil Cameron, Mark Emberton, John Hines, David Holden, Rachael Hunter, Colin Jackson, James Leighton, Tom Pharaoh, and Victoria Wood for their contributions to the development of this study.