COSA:Early detection of cancer in AYAs/Communication
|Guidelines contents||Introduction||Recommendations||Communication||Referral||Symptoms and signs||Clinical assessment||Cancers||Resources|
| GPs play an important role in cancer management. GPs should engage, guide and support AYAs with cancer throughout the entire journey and bring together recommendations and advice from other health professionals and specialists and make sense of it to the young person and their family.
The GPs role can be most effectively achieved through excellent communication skills which take into account the developmental stage of the young person, their cultural background and which include using appropriate language.
Youth-friendly care principles GPs can apply include:
Talking well with young people – ‘Youth-friendly’ communication
General practitioners (GPs) have a key role to play in providing comprehensive health care to adolescents and young adults (AYAs) by providing developmentally appropriate consultation and treatment and facilitating a collaborative treatment approach with other service providers.
Good communication skills are an essential tool for effective consultation with both AYAs and their family. GPs must balance the need for working with the AYA within the context of their family and their culture with the need to respect the young person’s developing identity and independence.
In the context of cancer diagnosis and management, communication skills become particularly important. Considerations should include fears of the parent/carer and AYA regarding malignancy, in some instances embarrassment of the AYA in disclosing symptoms and signs regarding sensitive body areas, as well as GP hesitancy until diagnosis is confirmed.
The information in this section draws significantly from the excellent resource Adolescent Health: Enhancing the skills of General Practitioners in caring for young people from culturally diverse backgrounds, GP Resource Kit 2nd Edition.
Broad principles in communication with AYAs
Adopt a ‘person-centred’ approach rather than a problem-centred approach. This means focussing on the AYA in the context of their life and relationships, as opposed to a narrow focus on the ‘problem’. Take an interest in them as a person - find out about their home and school life, and their interests. Spend time trying to establish a relationship; this might include having some time to talk with the AYA on their own.
|Some points for GPs to consider include:
Be yourself throughout the interview, while maintaining a professional manner - adolescents expect a doctor to be an authority, but not authoritarian
Adopt a straightforward and honest approach:
Be sensitive to the young person’s cultural background, values and norms e.g. some AYAs especially those from a culturally and linguistically diverse (CALD) background may initially be reluctant to discuss certain issues, such as their relationship with their parents and family life, as they may think that they do not have the right to complain. AYAs from a CALD background face the added challenge of dealing with the tasks of adolescence while growing up between two cultures.
Respond to non-verbal as well as verbal cues
Use an interactive and participatory style of communication:
Explain and ‘normalise’ the process of what you are doing and why, especially any examination procedures. This demonstrates positive regard and helps to address any fear or discomfort they may be feeling.
Take a one-down approach, let the AYA educate you about things they might be expert in e.g. information technology, teen jargon
Be non-judgemental in your approach – AYAs will find it difficult to be open and honest if they believe they will be lectured or admonished
However, this does not mean condoning risky behaviour:
Provide reassurance – this helps to validate the AYAs feelings and establish your role as an advocate for them.
Step-by-step youth-friendly consultation
The key to effective consultation with AYAs is building a supportive and trusting relationship with them. The GP’s approach and communication style has a significant impact on the patients comfort level and ease of communication, which may have an impact on the clinical information that is disclosed by AYAs.
|GPs can create a youth-friendly consultation by:
Spending time engaging the young person. Effective engagement with AYAs requires:
Negotiating to see the AYA alone. Explain upfront to family members that this is not about excluding them but giving the young person an opportunity to talk to their doctor independently.
Respecting and maintaining confidentiality. The most significant barrier identified by AYAs is fear about confidentiality and trust; this includes concerns about the GP disclosing information to their parents, lack of privacy in the waiting room and reception staff not protecting their confidentiality. Discuss confidentiality at the beginning of the consultation with parents and carers present. Also discuss confidentiality and the reporting of results of investigations.
Deciding with the AYA which issues to discuss with parents/carers, the level of family involvement and what information will remain private between the patient and GP
Addressing parents’ concerns and involve them where possible
Considering the following:
Being sensitive to and respecting cultural norms when seeing AYAs from CALD or other cultural backgrounds
Adopting a non-judgemental and collaborative approach
Consulting with the AYA on the development of a management plan
Understanding the implications of embarrassment for AYAs. Young people can feel very embarrassed about disclosing symptoms about sensitive body areas and certain symptoms and signs may only be acknowledged if the GP asks direct questions.
GPs should try and maintaining youth-friendly principles across the whole practice - with reception and nursing staff and including waiting room atmosphere. This includes ensuring that reception staff explain “Medicare” and the obtaining of “Medicare cards” at age 15 to all AYAs.
Balancing parental involvement
Many AYAs remain embedded within the family system and parents are the main providers of physical and emotional support for most young people. It is important to involve parents in any management/treatment plan, especially if the AYA is younger or their cultural background necessitates it.
See more information on involving parents and addressing resistance to parental involvement (page 48-49).
Supporting AYAs and their family along the pathway to diagnosis
The period from first contact with the GP to the time of a definitive diagnosis (the symptom interval stage) can be marked by great uncertainty, anxiety and stress for an AYA awaiting their first specialist appointment or investigations. It is a time when information and support is very important to the patient and their family.
The symptom interval stage involves a patient moving from being ‘a person without cancer’ to potentially ‘a person with cancer’. Good communication between GPs and AYAs is essential, supported by the provision of evidence-based information offered in an age-appropriate form.
GPs play a critical role in the management and assessment of AYAs presenting with symptoms and/or signs that are potentially due to cancer in assisting them with their information needs (Table 1).
Table 1. Patient information needs throughout the cancer diagnosis pathway
|Pathway stage||Potential information needs|
|Symptoms discovered||• Reassurance and advice to seek help
• Information concerning symptoms and signs of cancer
|Present to GP or other primary health care provider||• Information concerning symptoms and signs of cancer
• Information about tests required
|Referred to specialist||• How to get to the hospital and what to expect during investigations
• When and how the results will be given
• Psychological support for the patient and family including information on access to local primary care and support services
• Sign-posting to the relevant information and support network
- Language used by the GP
- CALD patient background
- Communication style of the GP
- Nature of the clinical environment (intimidating or not)
- Cognitive development of the patient.
Some suggestions for GPs on initiating discussion around suspected cancer are presented in Table 2.
Table 2. Suspected cancer discussion
|“Looking at what we have come up with so far there are some things that are worrying me. It is my job to look at the scary and not-so-scary causes because we need to rule them out. The scary causes can include things like cancer, but it is less likely.”|
|“Because the results seem to indicate there may be possibility of cancer we need to look at this a bit further. So I’ll be sending you to see a specialist team who look at this all the time and are used to seeing people who are young like you. They may or may not need to do further tests at the time, you will be fully informed about your options and they will be able to answer any further questions you may have.”|
GPs may find it helpful to provide information in a number of different ways e.g. written and diagrams. In addition, most AYAs are computer literate and regularly use the Internet as a source of information and support. Given the limited number of websites available with information targeted directly to young people explaining cancer, GPs could support AYAs by recommending websites that are safe, authoritative and appropriate to their age. See resources for further information.
GPs can also assist AYAs by initiating common questions (such as “will I lose all my hair?”, “am I going to die?”, “what is going to happen next?”), rather than waiting for them to do so. Young people may be reluctant to ask questions for fear of seeming ‘stupid’. They may feel intimidated in healthcare settings. Silence should not be interpreted as a lack of desire to understand what is going on or an indication that they do not have any further questions.
The GP should aim to establish good communication and build a supportive relationship with the AYA and their parents from the beginning as this will be needed for further management should the young person be found to have cancer.
Information given to AYAs and their families by the GP should cover, among other issues:
- Where the patient is being referred to and why
- How long they will have to wait for the appointment
- How to obtain further information about the type of cancer suspected
- Who they will be seen by
- What to expect from the service they will be attending
- What type of tests will be carried out, and what will happen during diagnostic procedures
- How long it will take to get a diagnosis
- Whether they can take someone with them to the appointment
- Sources of support, including those for minority groups.
It is important for GPs to offer their support while the AYA is waiting for an appointment and encourage the young person to telephone if they have any concerns.
Breaking bad news
The task of breaking bad news will never be easy, but having a plan of action and knowing that you can support the patient through this difficult time should help considerably. The S-P-I-K-E-S protocol provides a simple, easily learned strategy for communicating bad news and suggests ways to assess the situation as it evolves and respond constructively to patients. Showing empathy, exploring the patient’s understanding and acceptance of what he or she has just learned, and validating the patient’s feelings can provide much-needed support to the patient, an essential psychological intervention for managing distress and helping the patient face the treatment decisions ahead.
- ↑ 1.0 1.1 1.2 1.3 Chown P, Kang M, Sanci L, Newnham V, Bennett DL. Adolescent Health: Enhancing the skills of General Practitioners in caring for young people from culturally diverse backgrounds, GP Resource Kit 2nd edition. Sydney: NSW Centre for the Advancement of Adolescent Health and Transcultural Mental Health Centre; 2008.
- ↑ 2.0 2.1 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].
- ↑ Albritton KH, Eden T. Access to care Pediatr Blood Cancer 2008 May;50(5 Suppl):1094-8 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/18360836].
- ↑ English A, Ford CA. More evidence supports the need to protect confidentiality in adolescent health care J Adolesc Health 2007 Mar;40(3):199-200 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/17321417].
- ↑ 5.0 5.1 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].
- ↑ 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].
- ↑ 7.0 7.1 Windebank KP, Spinetta JJ. Do as I say or die: compliance in adolescents with cancer Pediatr Blood Cancer 2008 May;50(5 Suppl):1099-100 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/18360837].
- ↑ Duncan RE, Sawyer SM. Respecting adolescents' autonomy (as long as they make the right choice) J Adolesc Health 2010 Aug;47(2):113-4 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/20638002].
- ↑ Walter FM, Humphrys E, Tso S, Johnson M, Cohn S. Patient understanding of moles and skin cancer, and factors influencing presentation in primary care: a qualitative study BMC Fam Pract 2010 Aug 31;11:62 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/20807441].
- ↑ 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].
- ↑ National Collaborating Centre for Primary Care. Referral Guidelines for Suspected Cancer. Clinical guideline 27. London: National Institute for Health and Clinical Excellence; 2005.
- ↑ Modernisation Agency, National Cancer Action Team, Macmillian. Cancer in primary care: a guide to good practice. London: Department of Health; 2004.
- ↑ Schiffman JD, Csongradi E, Suzuki LK. Internet use among adolescent and young adults (AYA) with cancer Pediatr Blood Cancer 2008 Sep;51(3):410-5 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/18506753].
- ↑ Stinson JN, White M, Breakey V, Chong AL, Mak I, Low KK, et al. Perspectives on quality and content of information on the internet for adolescents with cancer Pediatr Blood Cancer 2011 Jul 15;57(1):97-104 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/21328524].
- ↑ 15.0 15.1 Buckman R. Breaking bad news: the S-P-I-K-E-S strategy. Psychosocial Oncology 2005;2:138-42.