- 1 Referral
- 1.1 Overview
- 1.1.1 Why have a referral pathway
- 1.1.2 Who should AYAs be referred to?
- 1.1.3 How to refer AYAs with suspected cancer
- 1.1.4 Urgent versus non-urgent referrals
- 1.1.5 Factors contributing to delayed referral
- 1.2 References
- 1.1 Overview
|Once the decision to refer has been made, GPs should make sure that the referral is made within 1 working day.||D|
|GPs should include all appropriate information in referral correspondence, including whether the referral is urgent or non-urgent.||D|
Why have a referral pathway
The complexity of cancer referral in general highlights the need for a simplified referral system for adolescents and young adults (AYAs) with cancer.
Referral issues are further complicated for general practitioners (GPs) who have questions such as:
- Which cancer specialist treats which disease?
- Should investigations be undertaken while awaiting referral?
- How can patients be ensured of timely access to a specialist?
- Does a patient need urgent or immediate review?
Cancer in AYAs is rare and GPs are likely to only see a handful of cases in their working careers. However, GPs should be mindful of the possibility of cancer and aim to reduce delays in referral, reduce waiting times and provide recommendations to improve patient experience in such cases.
Who should AYAs be referred to?
Once a presumptive diagnosis of cancer has been made, determining who to refer the patient to is a critical step.
Referral pathways for AYAs may take many routes and the referral process is often confusing. AYAs can be referred to a number of different specialists – emergency, surgical, general, paediatric or adult cancer services.
- AYAs should be referred to a paediatric oncologist or Youth Cancer Services, depending on local arrangements. If the patient is acutely unwell they should be taken to the closest emergency department where they will be stabilised before being transferred.
- AYAs with suspected bone tumours or soft tissue sarcomas should have surgical management at a regional sarcoma service.
- AYAs with suspected melanoma should be referred to a regional melanoma service, which are based in some public and private hospitals.
- Biopsy (to confirm diagnosis) is a highly specialised procedure and should only be done after pre-operative staging by Youth Cancer Service physicians. Biopsies in primary care should be avoided.
Inappropriate referrals increase the ‘symptom interval’ (see below) as patients have to be referred on to other specialists. Any investigations initiated outside the appropriate service may also lead to delays in diagnosis and management as the biological samples obtained may be insufficient or the staging investigations incorrect/incomplete.
How to refer AYAs with suspected cancer
National cancer targets are in place so that all patients with cancer are seen within two weeks from referral. GPs can help reduce diagnostic delays by:
- Making referrals within 1 working day
- Including all appropriate information in referral correspondence – state ‘possible cancer diagnosis’ so that the patient is triaged appropriately by the referring service and specify if the referral is urgent or non-urgent (see below)
- Following up urgent referrals (faxed or emailed) with a telephone call to the specialist
- Arranging a follow up appointment with the patient to ensure continuity
- Providing advice to patients and parents/carers regarding expected referral time frames.
Patients should contact their GP or specialist services if there appears to be a delay in accessing specialist appointments.
Urgent versus non-urgent referrals
The majority of AYAs referred to a cancer specialist should expect to be seen within the two week national target unless specified otherwise:
- Immediate: acute admission or referral occurring within a few hours, or even more quickly if necessary
- Urgent: patient seen within the national target for urgent referrals (currently two weeks)
- Non-urgent: all other referrals.
Factors contributing to delayed referral
Referral delays can cause delays in diagnosis and treatment and lead to negative medical and psychological outcomes for AYAs.
Although the clinical significance is unclear, studies have shown that longer delays may be associated with:
- Patients presenting with more advanced cancer and therefore poorer survival
- Increased cost implications due to more intensive treatment being needed
- A distrust or dissatisfaction of GPs who failed to recognise symptoms and signs of cancer.
Delays can occur at different points in the referral process. The ‘symptom interval’, or period of time between the initial symptoms and the initial treatment, can be divided into two main stages (Table 1).
Table 1. Symptom interval stages
|Patient delay||Time between initial symptoms and first consultation with a physician|
|Practitioner delay||Time between first consultation and initial treatment|
AYAs often present later than paediatric or adult patients. GPs should be aware of patient and practitioner factors that may delay referral, and try and minimise practitioner delay where possible (patient delay is outside the scope of this guidance):
Delay due to confounding factors in patient presentation
Cancer is uncommon in AYAs, and most GPs would not expect to consider cancer as a possible diagnosis in this age group. Symptoms of cancer are only reported in a small proportion of consultations and may be mistakenly attributed to other causes even when cancer specific symptoms are being described.
The need to consider action increases as the number of presenting symptoms and/or signs increases. AYAs presenting with persistent and unexplained symptoms and/or signs should be urgently referred. Further information on distinguishing cancer in AYAs can be found here.
Patient and practitioner delay can differ depending on tumour type e.g. patients with melanoma often to present to a GP comparatively late (median time 26 days) but are referred more quickly (median time 2 days) than other types of cancer.
The subtype and location of the tumour can also have an effect on the symptom interval e.g. infratentorial brain tumours are picked up sooner than supratentorial brain tumours, and pelvic and spinal bone tumours are diagnosed later than long bone tumours.
The highly sub-specialised nature of cancer referrals may lead to multiple referrals to different services and cause delay. It is important to streamline the number of health professionals patients are required to see if possible. Direct referral to Youth Cancer Services can provide paediatric and adult collaborative medical management, psychosocial support and surgical referral for AYAs.
Delay due to investigation
Waiting for the results of investigation before referral may lead to a delayed diagnosis. Negative results may be falsely reassuring and should not delay referral.
Investigations and referrals may proceed in parallel with one another.
Presentations with high suspicion of cancer should be referred urgently, such as those with persistent and unexplained symptoms and/or signs.
Information on appropriate investigations can be found here.
Delay due to geography
Patients from rural areas often report longer delays in seeing specialists which can lead to worse health outcomes. Rural patients may need to travel to metropolitan areas where Youth Cancer Services are located to aid diagnosis.
Rural GPs may be involved in local cancer care provision, which may delay referral to a Youth Cancer Service. AYAs that are acutely unwell should be managed at a local emergency department before being transferred to a Youth Cancer Service. GPs should utilise teleconference facilities available at cancer services when possible to liaise with specialists.
Due to geographical constraints, rural GPs may be more inclined to initiate investigations which can result in longer delays to diagnosis. Rural patients should have investigations started after discussion with cancer service clinicians so that diagnostic delays are minimised.
Delay due to other factors
A number of referral delays may be due to the relationship between AYAs and their GP and the ability of the GP to communicate effectively. AYAs may be reluctant to describe symptoms or signs if not directly asked or communicated with in an age appropriate way because they don’t think it is serious or feel embarrassed (e.g. testicular mass).
Further information on establishing rapport and communicating with AYAs can be found here.
- Miedema BB, Easley J, Hamilton R. Young adults' experiences with cancer: comments from patients and survivors Can Fam Physician 2006 Nov;52(11):1446-7 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/17279205].
- Haimi M, Perez-Nahum M, Stein N, Ben Arush MW. The role of the doctor and the medical system in the diagnostic delay in pediatric malignancies Cancer Epidemiol 2011 Feb;35(1):83-9 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/20685192].
- Halperin EC, Watson DM, George SL. Duration of symptoms prior to diagnosis is related inversely to presenting disease stage in children with medulloblastoma Cancer 2001 Apr 15;91(8):1444-50 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/11301391].
- Smith S, Davies S, Wright D, Chapman C, Whiteson M. The experiences of teenagers and young adults with cancer--results of 2004 conference survey Eur J Oncol Nurs 2007 Sep;11(4):362-8 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/17287143].
- Dang-Tan T, Trottier H, Mery LS, Morrison HI, Barr RD, Greenberg ML, et al. Determinants of delays in treatment initiation in children and adolescents diagnosed with leukemia or lymphoma in Canada Int J Cancer 2010 Apr 15;126(8):1936-43 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/19795458].
- Goyal S, Roscoe J, Ryder WD, Gattamaneni HR, Eden TO. Symptom interval in young people with bone cancer Eur J Cancer 2004 Oct;40(15):2280-6 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/15454254].
- Thulesius H, Pola J, Håkansson A. Diagnostic delay in pediatric malignancies--a population-based study Acta Oncol 2000;39(7):873-6 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/11145447].
- Robb K, Stubbings S, Ramirez A, Macleod U, Austoker J, Waller J, et al. Public awareness of cancer in Britain: a population-based survey of adults Br J Cancer 2009 Dec 3;101 Suppl 2:S18-23 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/19956158].
- Fern LA, Campbell C, Eden TO, Grant R, Lewis I, Macleod U, et al. How frequently do young people with potential cancer symptoms present in primary care? Br J Gen Pract 2011 May;61(586):e223-30 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/21619746].
- Baughan P, O'Neill B, Fletcher E. Auditing the diagnosis of cancer in primary care: the experience in Scotland Br J Cancer 2009 Dec 3;101 Suppl 2:S87-91 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/19956170].
- Australian Institute of Health and Welfare (AIHW). Cancer in adolescents and young adults in Australia. Cancer series number 62. Canberra: AIHW; 2011.
- Roushdi A, Bassal M, Johnston DL. Delayed diagnosis in an adolescent with a malignant testicular tumour Paediatr Child Health 2009 Jul;14(6):393-4 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/20592977].