Cancer screening for people with disabilities: guide for general practice
International and Australian data indicates that people with disabilities are under-screened for cancer.[1] General practice plays an important role in enabling people with disabilities and their carers to participate in cancer screening.
This webpage explores barriers experienced by people with disabilities in accessing cancer screening, recommendations to help address these barriers and considerations when determining suitability for cancer screening pathways.
This webpage was adapted from the resource Cancer screening for people with disabilities: A guide for general practice which was co-designed with BreastScreen Victoria.
Cancer risk factors
Risk factors for cancer can include:
- age
- family history
- lifestyle behaviours and modifiable risk factors
- previous cancers
- under screened or never screened
- other illnesses (e.g. Crohn’s disease, ulcerative colitis)
After you have assessed the patient’s cancer risk, consider whether the benefit of screening outweighs the potentially negative experience for the individual and if further procedures on the clinical pathway would be possible.
Barriers to cancer screening and how health professionals can help improve access
Here are some barriers you may experience when supporting patients with a disability to take part in cancer screening, along with some solutions for improving access.
| Barriers | Solutions |
|---|---|
| Identifying the need for care tailored to a person with a disability |
– Include a tick box on new patient forms to identify a pre-existing disability. – Posters for waiting rooms encouraging people to disclose their disability. – Include disability status on referral forms. |
| Accessibility of GP clinics |
– Make changes that improve physical accessibility, including wheelchair accessibility in screening rooms. – Consider alternative screening options e.g. self-collected test or colonoscopy. – Consider the room set-up for a patient with a disability e.g. Hi Lo bed or a bed with a hoist. – Consider offering outreach clinical services if appropriate. – Ensure staffing resources are sufficient e.g. a female support person can be present if needed. |
| Competing health needs and time pressure |
– Provide longer appointments or consider dividing the appointment in to two parts – one to discuss other health-related issues/fears related to screening, and the other for screening clinical pathways. – Include cancer screening in the patient’s health care plan. |
| Communication barriers |
– Provide resources in plain language and other accessible formats, such as large print or text-to-talk platforms. – Involve the patient in the decision to screen – is this the right decision? Are there other options? – Ensure translators and/or professional support workers are present, where required. – Talk directly to the patient (where possible), rather than to their carer or support person. – See the patient alone for some of the consultation (if possible). – Encourage people with hearing or speech impairments to make appointments using the National Relay Service (see More information and resources at the bottom of the page). – Ask questions to ascertain current or prior knowledge of screening. |
| Fear/embarrassment of the procedure |
– Prior to the appointment, inform the patient of the people involved in the screening process. – Explain the procedure, using resources in accessible formats such as large print/plain language and/or use models or diagrams. – Women and people with a cervix with intellectual disabilities are at an increased risk of sexual assault [2] and may be reminded of the experience by procedures such as cervical screening. Additional support and sensitive communication is required. – Cervical screening can be a confronting experience and the presence of a support person can help alleviate stress and anxiety. – Consider whether the patient would feel more at ease with a staff member of the same gender. Provide a female support person for the duration of the appointment (all BreastScreen radiographers are women). – Encourage patients to make a familiarisation visit prior to the screen. |
| Pain/discomfort (discomfort during screening can be distressing for people with intellectual disabilities, or can be severely painful for people with certain physical disabilities) |
– Establish whether the benefit of screening outweighs the potentially negative experience the individual may encounter and, if necessary, discuss alternative screening options. – If screening, communicate with the patient clearly and continually about what is going to happen next in the procedure. –Explain that the patient can stop the procedure at any time and agree on a signal. |
| GP apprehension around obtaining informed consent/medical treatment decision-maker consent |
– Provide information about the benefits and harms of cancer screening and the procedure so the patient can make an empowered decision to take part. – Identify who is the medical treatment decision maker (if applicable). |
Talking points
Here are some questions you can ask your patients to prompt them to talk about cancer and cancer screening.
- Are you aware of some of the risks for developing certain cancers?
- Have you ever been screened for bowel, breast or cervical cancer?
- Do you have any concerns about what will happen during the screen?
- Do you feel able to do the test on your own or would you like some help?
- Would having an interpreter, friend or support worker come to an appointment help you to feel more comfortable?
Bowel screening for people with disabilities
The National Bowel Cancer Screening Program (NBCSP) invites eligible people aged 50 to 74 to screen for bowel cancer using a free, simple at-home test. Bowel cancer screening kits are sent in the mail, to home addresses, based on the Medicare register every two years.
The test, also known as the Faecal Occult Blood Test (FOBT), looks for traces of blood in a bowel motion that may not be visible, and could be a sign of bowel cancer. The test is for people with no symptoms and no significant family history of bowel cancer and it is free through the national program.
The NBCSP aims to reduce deaths from bowel cancer through early detection of the disease. For more information visit National Bowel Cancer Screening Program.
Bowel screening considerations
- The patient must be able to understand and follow the steps involved in doing the FOBT including taking the two samples, completing the necessary label on the collection tube, and completing the participant details form. The patient’s carer can assist if required.
- It’s important to consider before screening that if an FOBT returns a positive result, the individual is informed and able to undergo colonoscopy.
- Some people may not be suitable to conduct the test at home if they are a high falls risk.
- If unable to complete an FOBT by themselves, with the patient’s consent, a carer or support person is able to assist. For example, a disability support worker who assists with toileting and hygiene.
Results and pathways
If the FOBT returns a positive result the GP will be notified.
A follow up appointment is needed to discuss further testing and a colonoscopy may be required.
Preparation for colonoscopy is the main barrier for people with disabilities moving through the bowel cancer screening pathway.
Things to consider:
- Ability to undergo preparation for colonoscopy (consider admitting patient one day prior).
- Colonoscopy preparation includes fasting, consuming only liquids and frequent and urgent bowel movements.
- If colonoscopy is necessary GPs are recommended to provide details about the patient’s disability and their additional needs in the referral to the specialist.
Learn more about bowel screening and pathways for treatment.
Access the Clinical practice guidelines for the prevention, early detection and management of colorectal cancer.
Breast screening for people with disabilities
The National Breast Cancer Screening Program (BreastScreen Australia) recommends that women (including trans women, and trans men and nonbinary people who fit the eligibility criteria) aged 50 to 74 years attend free two-yearly mammograms.
Women are eligible from 40 years.
This program is for asymptomatic people. Patients with symptoms should be referred to a diagnostic service for quicker and more targeted results.
Breast screening considerations
- The patient must be able to hold position and stay still during the screen.
- The patient must be able to hold their arms above shoulder height.
- People who use a wheelchair are advised to come in a wheelchair which has removable arms. To find out about wheelchair accessibility call 13 20 50. A small amount of radiation is involved.
- Some people with limited mobility are unable to be positioned appropriately for a complete breast screen. This is due to the limitations of the equipment, meaning that radiographers may not be able to obtain an image of the entire breast. For these people, other tests such as ultrasound may be helpful but still have limitations and barriers. BreastScreen Victoria may be able to organise a familiarisation visit before the breast screen appointment.
Results and pathways
If there is an area on the mammogram that needs further investigation, the person may be recalled for further tests such as extra mammograms, breast ultrasound, breast examination or needle biopsy.
Consider physical and emotional impacts that these tests may have as well as the consent needed for medical procedures.
Find more information about BreastScreen for people with a disability.
Cervical screening for people with disabilities
The National Cervical Screening Program recommends all women and people with a cervix aged 25 to 74 to have a Cervical Screening Test every 5 years.
Anyone who is eligible for cervical screening should be offered the choice of HPV (human papillomavirus) testing either through self-collection of a vaginal sample without the use of a speculum or clinician-collection of a sample from the cervix.
People should be given information about the pros and cons of both screening options including possible follow up in order to support informed choice.
There may be assumptions that people with disabilities have never been sexually active. Ask all people with a cervix if they are due for screening and check their screening history using the National Cancer Screening Register.
HPV vaccination should be given to adolescents with disabilities as a preventative measure for cervical cancer. It should not be assumed that all patients receive the vaccination through their school and their vaccination status should be checked.
Cervical screening considerations
- Check if the patient is familiar with the self-collection and clinician-collection cervical screening options. Consider who else might be able to support obtaining the patient’s informed consent.
- If the patient chooses to have a self-collected test, provide information about how to collect the sample. Explain that you can help them do the test or do the test for them using the self-collection swab if they would prefer.
- If the patient chooses a clinician-collected sample from the cervix, the physical nature of the speculum exam may require the use of an adjustable bed or hoist. Consider the patient’s ability to lie on their back or side and move their legs apart to insert the speculum.
- Self-collection should be offered in a clinic setting where possible. However, self-collection can occur in any setting that the healthcare professional believes is appropriate. It is the responsibility of the healthcare professional to facilitate access to screening, and the pathology laboratory should deliver the results to the requesting healthcare professional who will be responsible for communicating results and any required follow-up to participants.
Results and pathways
While most screening results will be negative, it’s important to consider that a positive result will require follow up.
- If a self-collected sample returns a positive HPV result, the next step is either a speculum examination for a clinician-collected sample for cytology or referral for colposcopy depending on the HPV type. Therefore, ensure an individual is informed and able to undergo these procedures if needed and what additional supports may be required.
- If a clinician collected sample returns a positive result, a colposcopy may be required.
People with a disability may require additional support may involve, for example, reassurance and explanation of the screening pathway and follow-up procedures, longer appointments, or additional follow-up.
Should the GP be unable to complete the Cervical Screening Test for any reason, or the results are inconclusive, the GP can refer the patient to a gynaecologist or a Women’s Health Clinic for an opinion.
Find more information about cervical screening and pathways.
More information and resources
You can find more information about cancer screening by contacting:
- Cancer Council Victoria on 13 11 20
- BreastScreen Victoria on 13 20 50
- National Cancer Screening Register (NCSR) 1800 627 701. Contact the NCSR for more information about accessing your patient’s bowel and cervical screening results and histories.
The National Relay Service (NRS) allows people who are deaf, hard of hearing and/or have a speech impairment to make and receive phone calls.
Non-English speakers can call through TIS (Translating and Interpreting Service) by calling 13 14 50 and being connected to the appropriate screening program
To access plain language resources, visit the resource section of this website and filter for People with a Disability.
References
1. Floud S, Barnes I, Verfürden M, Kuper H, Gathani T, Blanks RG, Alison R, Patnick J, Beral V, Green J et al. Disability and participation in breast and bowel cancer screening in England: a large prospective study. Br. J. Cancer (Internet) 2017 (cited 2019 Aug 16);117(11):1711. Available from: https://www.nature.com/article... / DOI: 10.1038/bjc.2017.331
2. Nixon M, Thomas SDM, Daffern M, Ogloff JRP. Estimating the risk of crime and victimisation in people with intellectual disability: a data-linkage study. SOC PSYCH PSYCH EPID (Internet) 2017 (cited 2019 Aug 16); 52(5):617. Available from: https://link.springer.com/article/10.1007/s00127-017-1371-3