Cancer waiting times standards in Scotland: clinical review

6. Review themes and recommendations

6.1 Cancer Pathways

Current pathways indicating steps from referral/other presentation through diagnostics to treatment were collected from NHS Boards for the Review. Tumour specific pathways apply most frequently at NHS Board level, occasionally at regional level and even less frequently at a national level. The reason for variation among these pathways requires more detailed evaluation.

6.1.1 Tumour groups included in CWT standards

Scottish Cancer Waiting Times ( CWT) Standards currently apply to ten major cancer types selected on their rates of incidence and mortality. This differs from other UK nations as outlined in section 4.

There is a rolling programme of annual audits of additional pathways undertaken by ISD Scotland to ensure cancer patients not included in existing CWT standards are not adversely affected by longer waiting times.

In light of perceived patient benefit, colleagues in the third sector and cancer patient groups regularly request consideration of additional new cancer types to CWT standards scrutiny.

Recommendation: Re–evaluate inclusion/exclusion criteria of cancer types subject to CWT standards while taking into account the level of resource available for any additional data collection requests.

6.1.2 Time associated CWT standards

Third sector and patient groups have long expressed the view that existing standards are too long, citing patient anxiety as a main concern.

There is no clear clinical evidence to support the choice of 62 or 31 days as the standards. It is assumed that delay, either by providers or patients, will have an adverse effect on outcomes, as patients will present with later stage disease. Again evidence to support this is not clear cut. A meta-analysis found "only moderate consensus" as to an association with time intervals in the diagnostic process and outcomes (Neal et al 2015).

There is a recognised waiting–times paradox in that late stage disease may present rapidly due to alarm symptoms and conversely early stage disease may be diagnosed after many months. The conclusion, presented by an expert in this field at the Review's stakeholder event, was that for most cancer cases a short delay was not clinically significant but clearly could have a major impact in terms of patient/carer anxiety.

Individual tumour biology also needs to be considered in any modification of standards' duration. Patients with some tumours e.g. leukaemia's and aggressive sub-types of lung cancer may require immediate treatment within a matter of days whereas for others waiting for intervals of a few months has no discernible effect on clinical outcome.

It is of note that the public questionnaire undertaken as part of the Review showed that there was a desire for rapid diagnosis but also recognition that the capacity to undertake and report on tests was limited. The survey found that 49% of the public and 55% of the patient group trusted clinical staff to prioritise cases appropriately. Of these, 60% of the public and 57% of the patient group attributed this to an overall trust in doctors and health professionals. Full results from the public/patient questionnaire can be seen in Appendix D.

Information collected for the Review shows that some of the pathways for the ten current tumour groups already are, or are becoming, more complex and multi-stepped than others in their diagnostic or treatment phases. Those with lengthening diagnostic components are increasingly challenged by the 62 day standard while for those where treatment options have increased the 31 day standard may be more problematic.

Given the lack of evidence of clinical benefit derived from 62 and 31 day time intervals it would be more useful to clarify what CWT standard duration is appropriate for each tumour type, be that shorter or longer than current timings.

Considering adding the optimal time intervals between steps on pathways would strengthen links between cancer tracking and CWT data collection and better identify bottlenecks.

Recommendation: Review evidence for making CWT standards timings variable according to tumour biology.

6.1.3 Considering additional CWT standards for Scotland

Thus far there is no clear evidence of the benefit to patient outcomes from the additional application of the Two Week Wait ( 2WW) CWT standard as applies in England.

While there is no current evidence to support the introduction of the 2WW CWT standard in Scotland, the outcomes from the pilot of the 28 day faster diagnosis standard in England will require consideration when data on outcomes becomes available.

In NHS England, data is collected on the time intervals to subsequent treatments as well as to first treatment. Consideration of this as an additional standard in Scotland would require clear evidence of patient benefit and an evaluation of the existing data and audit capacity across NHS Scotland.

At this time however, there is no data to suggest the inclusion of additional standards would improve cancer patient outcomes in Scotland.

Recommendation: Review evidence of patient benefit from submitting additional time intervals within the cancer pathway to CWT standards scrutiny e.g. time to subsequent treatment.

6.1.4 Getting the best out of CWT standards

The Review concluded that the introduction of CWT standards has improved data collection and efficiency of cancer pathways. It also recognised that there is no clear evidence that alternative time measurements are beneficial therefore, optimising the value of their measurement was agreed as a priority for the Review.

Scottish CWT data for the 31 day standard (from decision-to-treat to start of first treatment) suggests that this standard is largely being met and is acceptable to both public and clinical communities.

Additional risk stratification, according to tumour biology, could further improve the flow for the 31 day patient cohort and provide valuable decision making support information to clinical teams.

The Review recognises that the most challenging area is the 62 day standard (from urgent referral to first treatment) – where data reflects greater and increasing challenges in this standard being met.

Data analysed as part of the Review demonstrates that conversion rates from USC referrals to confirmed cancer diagnoses are generally low (3-5%) suggesting that there is scope to refine the selection of USC referral use. Data shows wide variation in overall conversion rates among Boards (6.2% to 25.2%) and by cancer type. It is recognised that some tumours e.g. pancreatic, colorectal and ovarian not infrequently present with vague rather than clear red flag symptoms and thus would be expected to have lower conversion rates.

Enhancing the selection of USC patients to better identify those at higher risk of a positive cancer diagnosis would likely reduce the number of patients going through this diagnostic pathway. This would allow more rapid throughput in diagnostics and ultimately earlier access to treatment options. In addition, this refinement of USC selection would avoid anxiety for those currently on an USC pathway unnecessarily.

It is essential that patients have immediate access to appropriate information and advice upon their USC referral, on its significance and possible outcomes.

An opportunity to refine and risk stratify USC patients occurs at two main points:

1. Primary care selection for USC referral and;

2. Secondary care optimal triage of received USC referrals.

Recommendations:

• Ensure that existing agreed cancer pathways are reactive to new techniques and treatments with well-established processes to enable change to be introduced.
• Minimise variance in agreed pathways by regular cross comparison and dialogue with local, regional and national specialty services.
• Refine the selection of USC patients in both primary and secondary care.

6.2 Primary Care

The existing Scottish Referral Guidelines for Suspected Cancer (2014) are well regarded within primary care to help guide USC referrals. However, adjustment/qualification of existing signs and symptoms would likely enhance their discriminating power while incorporating newer diagnostic techniques ( e.g. qFIT, mpMRI) that have emerged since their publication. Newer decision making support tools like Q Cancer should also be considered alongside an update to give an improved degree of risk stratification at the time of referral.

For tumour types with characteristic sign/symptom constellations there is a clear next diagnostic step to diagnosis while those types with vague symptoms may require several investigative steps before a cancer diagnosis is delivered, or not. Allowing primary care colleagues direct access to diagnostics would speed up the diagnostic pathway in both of these tumour types. Review data from ISD Scotland/ NHS Boards demonstrated variance in availability of direct access to diagnostics across NHS Scotland - this needs to be explored and rectified.

Recommendations:

• Undertake a review of Scottish Referral Guidelines for Suspected Cancer.
• Reduce variance in availability of protocol led direct access to diagnostics.
• Ensure patients are provided with adequate information and support at the time of their USC referral.

6.3 Secondary Care

6.3.1 Triage

Receipt of an USC referral in secondary care provides a further opportunity to stratify patient flow according to risk. In the majority of cases this is carried out by consultants. The Review's data showed considerable variation in practice between NHS Boards and within groups of triage clinicians. From discussions with Boards, there appeared to be an acknowledgement that some non-urgent referrals were received through the USC pathway, but that the limited time available for triage restricted the option of returning the referral to primary care to request additional information or re-classification of the patient's referral.

Opportunities for enhancing referral quality and valuable information exchange opportunities between secondary and primary care, are being missed. Adequate time allowance, to reflect the value of triage within clinical staff job planning, needs to be universal across NHS Scotland.

In some Boards, enhancement of USC referrals had been achieved by the use of virtual clinics and electronic advice lines between secondary care and primary care prior to diagnostic referral. After discussion, and clarification of case history patients can then be booked directly to the appropriate USC diagnostics team or clinic, redirected to another service or referred in routinely.

Recommendations:

• Embed smarter vetting/triage processes to ensure USC referred patients are managed in order of apparent risk, in terms of access to diagnostics/clinics and avoid variation by considering the use of triaging protocols.
• Regularly review availability of slots for USC patients in clinics, and diagnostics waiting lists (radiology, endoscopy etc.) and make these flexible to best meet pressures in real time.
• Encourage greater use of virtual clinics and advice services learning from NHS Boards where these have been successfully trialled.

6.3.2 Tracking patient progress

Data collected through the Review showed, once the patient had entered the relevant fast track USC pathway, there was variation across NHS Boards in how tracking of progress continued. Post triage delays can be minimised by having readily available slots for USC patients in relevant clinics and diagnostics lists together with up to date turnaround times for laboratory investigations. On-going tracking means that any delay or disruption within the diagnostic pathway can be promptly identified to the relevant clinical teams and patient accordingly.

NHS Boards highlighted the difficulty in arranging urgent appointments for patients who were unaware of their USC status. It seems likely that this lack of awareness contributes to DNA numbers for urgent clinics and key diagnostics. If a patient is made fully aware of the USC pathway they are on from the outset it seems likely that they will better understand the significance and importance of each step, feel more in control of the process and be better placed to make informed decisions about their care.

The Review data analysed showed that pressure in the USC pathway could sometimes impact on other high-risk groups such as patients under surveillance programmes due to a family history of cancer or previous clinical findings. Some of these groups may be at higher risk of cancer than the currently selected pool of USC referred patients.

Recommendations:

• Regularly review turnaround times for diagnostic laboratory tests and communicate to both clinical and tracking staff.
• Ensure that consideration is given to including other higher risk patient groups into any planning for USC referral patients.

6.4 Patient Support

Currently there are three Cancer Experience QPIs (Quality Performance Indicators) available although it is not clear how widespread the utilisation of these generic questions has been to date.

1. Communication: Patients should experience excellent communication from health care professionals throughout their cancer care.

2. Information Provision: Patients should experience excellent information provision from healthcare professionals throughout their cancer care.

3. Shared Decision-Making: Patients are empowered by healthcare professionals to share decisions about their care and treatment.

These are not subject to the type of regular scrutiny undertaken for tumour specific QPIs. Every effort should be made to encourage all NHS Boards to use the questions and review and act on the results accordingly.

The results from Scotland's first Cancer Patient Experience Survey were published in 2015/16, looking at the full care journey that a cancer patient experiences, from thinking that something might be wrong with them to the support they received after their treatment.

Interestingly, the majority of patients (82%) felt that they were seen by a hospital doctor as soon as they thought it was necessary.

Table 3: Length of time before first appointment with hospital doctor

How do you feel about the length of time you had to wait before your first appointment with a hospital doctor?	n	%
I was seen as soon as I thought was necessary	3,856	82%
I should have been seen a bit sooner	549	12%
I should have been seen a lot sooner	280	6%
Total	4,685	100%

Source: Scottish Cancer Patient Experience Survey 2015/16

Differences in patients' views about the wait before seeing a hospital doctor can partly be explained by the route that they took to hospital. Those that went to hospital following a screening appointment were most likely to be positive (95%) and unsurprisingly those who attended hospital after five or more visits to their GP practice were least likely to be positive (46%).

The Review's patient and public questionnaire and stakeholder input identified a need for better information and support for patients and their carers.

The Review's questionnaire reported that when asked about receiving information about the expected waiting time between having tests and receiving results, 31% of patients said that they received some information, but not enough while 17% said they didn't receive any.

When it came to receiving information about the time expected to wait from receiving their diagnosis to starting treatment, 29% said that they received some information but not enough while 15% said they didn't receive any information.

The end goal of the well informed patient is someone who is best placed to share in decisions regarding their cancer care. This begins with ensuring clear explanations of all steps of the pathway are available and understandable. For some patients a link worker, intermediary or key contact may be the solution for part or all of their cancer journey.

Given the increasing amount and variable quality of cancer related information on and offline it is important that patients are signposted to additional, trusted quality sources. The introduction of patient tailored accessible information at the time of their USC referral seems logical with additional information milestones highlighted at later points in their pathway.

There has been a notable recent increase in the use of Patient Reported Outcome Measures ( PROMs) as a means of understanding the benefits of interventions such as surgery or for monitoring patients with long term conditions. These provide an added layer of information to the responsible clinician and can facilitate access to online advice between appointments.

In the USA there is now evidence that cancer survival is improved in cohorts of patients contributing to PROMs, compared to those on standard follow-up (Basch 2017). For cancer, incorporating PROMs into routine practice would provide an additional valuable measure to current survival and other outcome measures.

Recommendations:

• Ensure appropriate information on the USC referral process, tests throughout and purpose is available at the point of referral from primary care.
• Ensure an appropriate and consistent level of information is available throughout the whole pathway and dovetails, if needed, with treatment pathways and explanation of results.
• Provide a key contact for all patients requiring additional support, while ensuring they are clearly signposted for patients to utilise.
• Ensure locally relevant details and timescales are incorporated into any patient information materials/documents.
• Review and act on the outcomes of patient experience QPIs and other relevant patient evaluation processes (e.g PROMs) as and when available.

6.5 Data

The Review process demonstrated widespread agreement that the requirement to collect CWT data had resulted in improvements in methods of data collection and streamlined cancer pathways. Overall survival figures for cancer are improving but clearly this will reflect elements such as advances in treatments, effects of screening programmes, earlier stage diagnoses and possible changes in tumour biology, in addition to any effect of CWT data collection.

Data gathered by key personnel (trackers, Cancer Managers, MDT co-ordinators and audit staff) currently provides information for clinicians and planners although all these data sources are not fully integrated. The Review data analysed revealed wide variation across NHS Boards in the numbers and grades of staff involved in this data collection process and the ability to utilise the staff flexibly. All NHS Boards felt capacity was adequate for currently collected CWT data.

Further NHS Board variance was apparent in the application of exclusion criteria and other adjustments to CWT data - the reasons for this variance need to be identified. Consideration should be given to removing some exclusion criteria to align with other UK nations.

During the Review concerns were raised, from the steering group and via the stakeholder event, about the ease and immediacy of availability of CWT data for clinical use. Recent introduction of dashboards such as those provided by ISD Scotland should improve this but the consensus of the Review was that better signposting to dashboards is required.

Recommendations:

• Embed proven good practice of close tracking of USC referral patients by fully supported tracking, audit and MDT staff.
• Review any current variance in data collection e.g. in application of exclusion criteria and other adjustments.
• Liaise with ISD Scotland colleagues to maximise available data usage for patient and service benefits.
• Ensure that all clinically relevant data e.g. from MDTs is assimilated into cancer tracking/pathway information.
• Integrate CWT data with any additional available outcome data such as recurrence rates and PROMs as well as survival/mortality.