- 1 Providing age-appropriate clinical management
- 1.1 Overview
- 1.2 Support the young person when an inpatient
- 1.3 Maintain continuity of care as a priority for this age group
- 1.4 Manage adherence issues with AYA patients
- 1.5 Discuss use of complementary and alternative therapies
- 1.6 Maintain contact with the young person into survivorship
- 1.7 Ensure there are appropriate ‘boundaries’ between health professionals and AYA patients
- 1.8 Promote professional self-care for staff working with AYA patients
- 1.9 References
Providing age-appropriate clinical management
Clinical management of a patient includes all aspects of delivering cancer treatment and managing treatment effects. There are many aspects of clinical care that can and should be altered slightly to make it more age-specific for AYA patients, whether they are treated in a setting that sees only a few AYA patients a year or one that provides care to a large number of AYAs. Referral to palliative care for symptom management and support can occur at any time and should be considered even when the individual is undergoing active treatment.
- The simplest and most effective way to improve clinical care for AYAs with cancer is to appoint a ‘key worker’ from within the multidisciplinary treatment team. The role of this worker is to assist the patient and their family to navigate the health system by providing consistency, advocacy, advice and support.
Support the young person when an inpatient
Support the young person when an inpatient
For most adolescents and young adult patients with cancer, their cancer treatment will be their first experience of the acute health system. Many will feel anxious and unsure what to expect and do while a hospital inpatient.
- To reduce pre-admission anxiety, all young people should be acquainted with their treatment setting before their first admission. Consider arranging a pre-admission visit to the treatment setting.
- Implement strategies to reduce the amount of time the young person spends in the treatment setting. For example: suggest that the young person ring the ward on the day of their admission to determine the best time to arrive to reduce unnecessary waiting times; have bloods taken the day before admission; have chemotherapy orders written up the day before each admission to reduce waiting times.
- Offer patients a choice of sharing a room with other AYA patients or having privacy, wherever possible. Research suggests young people gain a more positive hospital experience when sharing with others of the same age group.
- Provide information about the availability of entertainment equipment and recreational activities to assist young people to feel ‘normal’, limit the rigid structure of the hospital setting and promote social interactions.
- Prior to the first treatment suggest ‘home comforts’ that the patient can bring with them to encourage a sense of familiarity and safety such as pillows, doonas, photographs, games, computers, portable DVD players, and music players.
- When treating patients under the age of 18 in adult settings, it is important to be aware of young people at risk and child protection issues. All services for young people should demonstrate strong and up-to-date child protection arrangements.
- Young people have specific and often complex supportive care needs that require regular review throughout their treatment period. It is recommended that young people are booked in for treatment earlier in the week to ensure that they have full access to appropriate support.
- Ensure the young person is aware of what is, and is not, acceptable behaviour inside the hospital. Discuss expectations about behavior as early as possible. For teenage patients, it is often best to have parents present for this discussion so that all are aware of the expectations.
- Consider developing flexible arrangements regarding visiting times for parents and friends. This should be negotiated with the patient to ensure that the patient has some designated time alone when they want to.
- Allow ‘negotiation of the negotiables’ in the ward setting, to increase the patient’s sense of control.
- Clearly explain to the young person what they can expect during each day they are an inpatient to avoid situations where they are unprepared for routine tests and procedures e.g. a specimen collection nurse arriving unannounced, and without prior discussion, to perform a nasopharyngeal aspirate.
- Having a whiteboard in the patient’s room can help to communicate with the young person by (a) facilitating discussion of complex clinical issues, (b) recording the times and dates of planned investigations or treatments, and (c) keeping track of white cell counts, and the like.
Maintain continuity of care as a priority for this age group
Continuity of care promotes a sense of safety and trust for AYA patients. Where possible, maintaining continuity of care should be prioritised when planning treatment and care for these patients.
- Consider implementing a primary nurse model for patients requiring prolonged and frequent inpatient admissions. In this model the care of the patient is managed and coordinated by one nurse from the time of admission through to discharge. The primary nurse liaises with the multidisciplinary team and other allied health professionals to ensure that the patient receives continuity of care.
- Treating institutions should have a cross-institutional psychosocial handover procedure. While medical handover is regarded as standard practice and a legal duty, it is important to also ensure adequate handover of supportive care.
Manage adherence issues with AYA patients
The prevalence of treatment non-adherence among AYAs with cancer is estimated to be between 27% and 60%. However, the actual prevalence is unknown, due to varying definitions of what constitutes non-adherence, and the practical difficulties inherent in obtaining objective measures of non-adherence.
Variables associated with non-adherence in AYA cancer patients include:
- Poor family and clinician relationships and communication. Positive family relationships and open communication support adherence, while poor relationships are associated with worse adherence. Overly controlling relationships with parents (or clinicians) predict adherence problems.
- Inadequate psychosocial support.
- Rite of passage events (e.g. 18th or 21st birthday parties, graduation).
- Adverse effects of treatment affecting appearance.
- Perceived lack of involvement in decision making.
Time spent explaining medication and developing strategies to promote adherence soon after diagnosis may prevent problems with adherence later on. Open, honest, non-judgmental discussions conducted in a collaborative fashion with the young person are more likely to produce sustained behavioural change than an authoritarian (“do as I say or die”), judgmental or fear-invoking approaches. Providing all of the facts to assist the young person in making an informed decision about medication taking may improve their sense of control, but also provide enough guidance for patients who may, because of their age, be more focused on current issues rather than future health.
Suggested strategies to promote adherence include:
- Provide education and anticipatory guidance. Explain the treatment and why it is important. Explain each medication or procedure, how it works, and why the drug or procedure is important.
- Acknowledge barriers to treatment, which may include adverse effects, cost, finding a pharmacy, interference with lifestyle/social events. Explore previous medication-taking experience – ask what made it hard or easy.
- Suggest adherence strategies e.g. having a routine for taking medication (link medication-taking to regularly scheduled event such as a daily meal), using reminder tools (e.g. reminder alarm on mobile phone), using organisation tools (e.g. dosette, or keeping medication in a visible location), having a back-up plan (e.g. carry an extra dose of medication in purse or wallet).
- Evaluate family relationships, psychosocial support, and history of psychological difficulties given the patient’s association with treatment adherence.
- Assess and monitor adherence at every clinic visit. Encourage the young person to bring their medications to each appointment to review the dose, purpose and any adverse effects. Review adherence and strategies being used to promote it whenever the young person has a significant change in their life e.g. return to education / work, career change, or stressful life events.
- Consider using a drug diary. While these are frequently inaccurate, they do facilitate discussion of adherence, particularly barriers to medication taking.
- Use drug assays (if available) and monitor blood indices (e.g. neutrophil count, liver enzymes) which may be ‘too normal’ when adherence is poor.
Poor adherence is very frequently an expression of distress. Explore this in detail, especially relationships with family and significant others. Ensure adequate psychosocial support (e.g. Clinical psychology, Social work). Given the association of family conflict with poor adherence, determine whether parents, siblings or partners may require additional psychological support, and, if appropriate, offer to facilitate this through the family general practitioner or another professional.
If poor adherence is recognised or suspected:
- Re-evaluate whether your treatment education and adherence promotion have been thorough enough. Communicating information clearly, honestly and collaboratively is often more effective than resorting to threats or authoritarian approaches.
- Enquire about the patient’s fears or unanswered questions regarding their disease, its treatment, or late effects.
- Explore barriers to adherence, and whether strategies to promote adherence have lapsed. Consider alternative strategies to assist adherence. If possible, simplify the dosing schedule, or alter the time (or frequency) of administration. Discuss strategies to deal with adherence at times of important social events (e.g. parties and weekend activities). Address adverse effects directly and consider strategies to minimise these.
- Increase monitoring – consider more frequent appointments and drug assays where available. Encourage the use of a drug diary – primarily to help identify times that the patient finds adherence to be difficult.
- Suggest that parents of adolescents consider rewards and reinforcement behaviours (e.g. allow young person to use the car) when adherence promoting behaviours are adhered to.
- In extreme cases, consider hospitalisation for stabilisation, education, and planning.
Discuss use of complementary and alternative therapies
About two-thirds of cancer patients use at least one complementary or alternative therapy, with some studies indicating even higher use, particularly among younger patients.
Complementary therapies are used alongside conventional treatment to help manage symptoms or side effects and improve quality of life, and include massage, acupuncture and meditation. ‘Alternative therapies’ are loosely defined as therapies that are promoted as treatments or ‘cures’ for cancer even though they have not been scientifically tested or proven.
People with cancer may turn to complementary or alternative therapies as a source of hope, because they have a preference for ‘natural’ therapies, or feel they offer them greater ‘control’ of their disease. Most users believe the therapies are beneficial even when efficacy has not been proven.
- When taking a medical history, and at other times when appropriate, ask patients about their past, present or planned use of therapies other than their prescribed medical treatments. Studies have shown that many patients who do use other therapies don’t tell their doctors, often because they are concerned about negative responses. Hence it’s important to raise the topic in a non-judgmental way and support the patient’s choice while discussing any issues of effectiveness and safety.
- Provide or refer patients to reliable sources of information about complementary and alternative therapies. Ensure they understand that while complementary therapies can provide support and enhance quality of life during and after treatment, most alternative therapies have not been scientifically tested and some may interfere with their medical treatment or be harmful or toxic.
Maintain contact with the young person into survivorship
The end of treatment is often a time of great psychological stress for the AYA patient due to the combination of processing what has gone on during the cancer journey to date, and also losing the ‘safety net’ of ongoing treatment and regular contact with the clinicians. The patient’s psychological vulnerability at this time can be ameliorated by maintaining a level of contact with the primary treating clinician and other members of the treating team, and by providing psychoeducation and information about the common problems young patients experience. This helps reduce anxiety or stigma attached with distress after treatment ends, and a sense of ‘I should be over this’ and ‘Why can’t I move on?’.
- It is recommended that young people continue to have contact with their primary treating clinician during the early stages of their survivorship to reduce feelings of abandonment.
- Provide the AYA patient with a complete treatment summary. Adolescents and young adults are a transient group and they may not receive all post-treatment screening and medical management from the same institution that managed their active treatment. Additionally, they often may not have a regular GP or may change GPs due to moving home or other life circumstances. It is important for the young person to have a summary of all the treatment that they received, complications they experienced, and a list of potential long-term impacts. This is particularly the case in situations where parents or partners have played a major role in supporting the patient through treatment as the young person may be unaware of their treatment information.
- Develop written survivorship care plans so that all young people are aware of follow-up arrangements, available supports, referrals and contact details. These plans support the patient to manage the transition to survivorship and provide reassurance that there is support available if required.
- As the survivorship and late-effect issues faced by AYA cancer patients are different from those in other age groups, treating institutions should be providing this group of survivors with tailored, up-to-date and age-appropriate written information.
Ensure there are appropriate ‘boundaries’ between health professionals and AYA patients
The age of an AYA patient and their inexperience of the health system can create dynamics with health professionals and ward staff that would not occur with other age groups. In some instances nurses may be a similar age or only a little older than the patient. Boundary issues may arise and the need for staff support is intensified. Similarly, older professionals may also have boundary problems as they may respond inappropriately to young patients as if they were their own children.
Social liaison and recreational networking outside of the acute health setting and primary site of treatment crosses the boundaries between heath care professional and young patient. Maintaining a caring but professional demeanour, and containing level of involvement with young patients to the hospital setting, promotes healthy independent, autonomous development of the young patient.
- It is generally inappropriate for social interactions to occur between staff and patients outside of the work environment. It is recommended that institutions treating AYA patients highlight the vulnerabilities of their staff when dealing with patients in this age group and explicitly state institutional policy regarding such relationships. This should be reiterated on a regular basis.
- Clinical staff should be mindful of the personal information they share with young patients. While it is understandable that strong relationships can be built over lengthy treatment periods, staff need to be mindful of the different positions of ‘power’ and vulnerability, and consider the potential impact on the patient.
- Staff should encourage patients to strengthen their existing friendships and should be wary of filling a social void that may create greater problems for the patient when treatment ends or during complex and confronting times in their cancer journey.
Adding further to these boundary issues is the high use of social networking by members of this age group. Many young people use social networking on a daily basis. This type of social contact may create opportunities for inappropriate contact between patients and staff that may not occur in a ‘face-to-face’ relationship and has the potential to complicate the professional relationship.
- Given the rapid development and continuing evolution of social networking it is recommended that institutions managing young patients develop policy around its use by staff.
- It is strongly recommended that staff and patients do not become ‘friends’ on a social networking site (such as Facebook).
- If members of the treating team are using social networking sites such as Facebook, it is recommended that a ‘standard response’ is developed to reply to any friend requests from patients.
Promote professional self-care for staff working with AYA patients
Professional self-care is an essential component of providing best practice clinical care to this age group. Caring for AYA cancer patients – and in many cases juggling and negotiating the often-clashing needs and wishes of family members and significant others – is stressful. There is a risk of burnout or sub-optimal patterns of work if professionals involved in AYA cancer care are not mindful of the potential for over-identification with young patients or family members, violations to professional boundaries, past or present personal grief/loss feelings that may be triggered, and splitting across teams. It is crucial to consider the possible impact of the sensitive, dynamic, and often intimate work performed by health professionals on their own psychosocial health.
- Regular and timely support is essential for staff caring for AYA patients.
- Regular peer consultation in a validating, empathic and professional team environment that has governing boundaries and agreed limits of confidentiality may provide an avenue for regular case consultation, form a mode of debriefing for staff, and provide an opportunity for regular peer review. Collegial support and validation may assist in not only ensuring the health professional’s mental health but also of the young patient in their charge.
- A particular awareness of vulnerable times, and ways to access appropriate self-care strategies, modes of assistance, and emotional support, is important in maintaining the wellbeing of individuals and teams working with these patients.
- Palmer, S. Improving care for AYA patients treated within adult hospitals: what can be done right now? Cancer Forum 2009;33(1):22-25 Abstract available at http://www.cancerforum.org.au/Issues/2009/March/Forum/Improving_care_for_AYA_patients.htm.
- National Institute for Health and Clinical Excellence (NHS). Guidance on Cancer Services: Improving Outcomes in Children and Young People with Cancer. The Manual. London: NICE; 2005 Abstract available at http://guidance.nice.org.uk/CSGCYP.
- Association for the Welfare of Child Health. Guidelines for Hospital Based Child and Adolescent Care. Australian Council on Healthcare Standards: Sydney. 1998 Abstract available at http://catalogue.nla.gov.au/Record/399047.
- Palmer S, Thomas D. Adolescent and Young Adult Cancer Program, A Best Practice Framework for Working with 15-25 Year Old Cancer Patients Treated Within the Adult Health Sector. Melbourne: Peter MacCallum Cancer Centre; 2008 Abstract available at http://www1.petermac.org/ontrac/pdf/AYA-Practice-Framework.pdf.
- Smith S. Adolescent units-an evidence-based approach to quality nursing in adolescent care. Eur J Oncol Nurs 2004 Mar;8(1):20-9 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/15003741.
- CanTeen Australia. Adolescent and Young Adult Oncology Psychosocial Care Manual. Australia: CanTeen; 2011.
- Butow P, Palmer S, Pai A, Goodenough B, Luckett T, King M. Review of adherence-related issues in adolescents and young adults with cancer. J Clin Oncol 2010 Nov 10;28(32):4800-9 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/20212260.
- Joint Working Party on Palliative Care for Adolescents and Young Adults. Palliative Care for Young People Aged 13 – 24. ACT: Bristol. 2007 Abstract available at http://www.palliativecarescotland.org.uk/publications/sppc-publications/assorted-publications-on-specific-topics/palliative-care-for-young-people-aged-13-24-years.