19. Psychosocial care

From Cancer Guidelines Wiki

Anxiety and distress

It is well documented that the finding of an abnormality on cervical screening has the potential to cause anxiety and distress.[1][2][3][4][5][6][7][8][9][10] The degree and duration of psychological distress experienced by women with abnormal cervical screening depends on their understanding of the meaning of the results.[4][10] As women are usually asymptomatic when a cervical abnormality is detected on routine screening, they may feel particularly vulnerable and distressed. Younger women and those who have never had children are at increased risk of high levels of anxiety.[3]

Women’s concerns may be centred around several themes:

  • perceived threat to life, frequently with an assumption that there will be inevitable progression to invasive cancer
  • worry about future fertility
  • concern about risk of transmission to an intimate partner
  • concerns about disclosing human papillomavirus (HPVHuman papillomavirus) status to an intimate partner
  • guilt, shame and self-blame associated with past sexual behaviour
  • anger and mistrust of intimate partners; suspicion about infidelity.

As the trend in cervical screening shifts towards HPV testing, there is an emerging literature on the specific psychosocial and psychosexual issues associated with the psychological impact of positive HPV results and women’s understanding of the implications of this result.

Confirmation of a positive HPV result may carry with it an additional burden of psychological distress due to the direct association with exposure to a sexually transmitted infection.[10][11][12][13][14][15][16][17][18][19][20][21][22][23][24] Anxiety, fears and confusion surrounding the uncertainty of the meaning of cervical pathology are compounded by issues of stigma and poor understanding about exposure to HPVHuman papillomavirus. Psychosocial and psychosexual consequences may be significant and persistent, with the potential to result in clinical depression or an anxiety disorder requiring psychological interventions and treatment.

With increasing knowledge and understanding across the community that exposure to HPV infection is a pre-requisite for the development of cervical cancer, the general public understands the causal link between sexual behaviour and cancer more clearly than the implication of a cytological prediction of an intraepithelial lesion after a screening test.

Women who have not received vaccination, even though it was available to them, may feel distressed that they have failed to adequately protect themselves from infection. Those who have received the full course of HPV immunisation may feel distressed that the vaccine has 'failed'.

Anger about exposure to HPV may lead to suspicion about the fidelity of the intimate partner and have a negative effect on intimate relationships. Additionally, women may have fears about transmitting the virus to current or future sexual partners. Psychosexual function may be impaired with decreased libido and lower frequency of intercourse.[25]
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Management of distress

Information needs to be delivered in a sensitive manner and should be tailored to individual patient characteristics: age, education level, health literacy, parity, cultural/religious beliefs, mental health concerns and language proficiency.

  • Information should be delivered compassionately, non-judgmentally and in plain language (not medical jargon).
  • Provision of printed information resources should supplement verbal communication. If possible, pamphlets, fact sheets or booklets should be available in community language translations for culturally and linguistically diverse populations.

Information provided to women could:

  • explain the natural history of HPV infection
  • normalise the incidence of HPV infection as a commonly acquired community infection
  • reinforce that HPV infections are usually transient and do not progress to invasive cancer
  • reinforce the benefits of having identified the infection through screening, enabling monitoring and intervention as appropriate to prevent cancer by treating pre-cursor lesions
  • convey the message that, although HPV infection is relatively common, cervical cancer is uncommon in screened populations
  • address concerns about transmitting the virus to intimate partners and discuss safe sex practices
  • provide reassurance to reduce the stigma associated with HPV infection, then directing the conversation towards addressing the necessary next steps in evaluation and investigation
  • explain the colposcopic procedure and possible outcomes.

Healthcare providers should be mindful that the emotional distress associated with receiving information about a positive HPV result may temporarily impair a woman’s capacity to process and understand the result. Prior to the end of the consultation, health-care providers should reiterate the information and the next steps to be taken, checking that the woman has clearly understood the information.

Providing adequate information in a supportive environment, offering opportunities to ask questions and seek clarification, and ensuring a plan for communicating the next steps or investigations will usually be sufficient to allay the distress of most women. For those who demonstrate persistent elevated anxiety and distress, referral to other services for counselling may be helpful. Available services vary according to location, but may include women’s health services, GPs (who can initiate a mental health care plan), or counselling services within the local health facility.

Effective counselling strategies may be beneficial in alleviating distress for most women.[26][27][28][29][30]

Counselling techniques and interventions with evidence of effectiveness may include:[31]

  • psycho-education
  • brief emotional support
  • supportive-expressive therapy
  • cognitive behavioural therapy (CBT)
  • problem-solving approaches
  • relaxation, meditation or mindfulness skills.

Ideally, counselling should be offered as a face-to-face (where possible) discussion, rather than by phone or letter. Formal referral to a suitably qualified counsellor (such as a clinical psychologist, social worker, sexual health counsellor or women’s health counsellor) should be considered for women who experience persistent emotional distress. Australian guidelines for screening, assessment and management of anxiety and depression in adult cancer patients provide a useful resource.[31]
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Women with special needs

Some women with pre-existing psychosocial comorbidities may require referral to specialist services for expert assessment and intervention. Such women may be under-screened and therefore at higher risk of HPV infection.[32][33] Factors to consider as special circumstances include:

  • a history of trauma (including torture) – women may experience 'triggering' of trauma responses when informed about a positive HPV test. They should be offered immediate mental health assessment and counselling.[32][34]
  • known prior sexual abuse (childhood or adult)[35][36]
  • current or past history of intimate partner violence[37][38]
  • disabilities (physical and intellectual)[39]
  • history of substance misuse
  • significant mental health history
  • a history of female genital mutilation and/or surgical revision procedures.

Women from culturally and linguistically diverse backgrounds need to be given information in their first language, via health care interpreters or printed information resources. This is especially important for women from countries where there is no population-based cervical screening.

Women without stable accommodation and those who are socially marginalised may be non-compliant with necessary investigations following a positive oncogenic HPV test result. They may be difficult to locate or lost to follow up, frequently only re-emerging when symptomatic.[40]

For some women the first disclosure of sexual abuse may occur at the time of first speculum examination or in the context of receiving a positive HPV test result. Clinicians need to be aware of, and consider referral to, specialist state-based sexual assault counselling services for women with an identified background of sexual abuse.

For all women with additional psychosocial risk factors health professionals have a duty of care to be aware of the range of specialist treatment services within their jurisdictions, and to refer appropriately following consultation and consent from the woman.

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Education and information

It is important to educate women about the need for cervical screening and to differentiate HPV testing from other sexually transmitted infection testing. For vulnerable women who may not be well connected to mainstream health services, attendance for cervical screening affords health professionals an additional opportunity to provide education about screening for other sexually transmitted infections and safe sex practices such as condom use, pregnancy counselling and emergency contraception.[41][42][43][44][45][4][46][47][48][49][50][51][52][53][10]

Association of cervical screening with HPV testing may deter some women from participating in screening programs.[10] Attitudes and behaviours may include:

  • perceptions by women that they are not at risk of HPV infection due to their personal behaviours.
  • deeming HPV screening as unnecessary if they have received HPV vaccination.[54]
  • avoidance due to fear of a positive result and what that may mean for intimate relationships.

Women with psychosocial risk factors may be difficult to engage in screening programs.[55][56][57] For those who do undertake screening, elevated psychological distress following a positive HPV result may impede their ability to continue with recommended investigations and to adhere to cervical screening guideline recommendations.[58]

Education is required to counter the potential for distress that may be experienced by some women as the changes to cervical screening policy are implemented. The change to primary HPV testing, the later recommended age to commence screening and the longer screening interval may be perceived by some women as a cost-driven reduction in surveillance, thus exposing them to an increased risk of developing invasive cancer.

Effective education and information may assist women in decision-making, at the same time assisting their psychological adjustment, treatment compliance and satisfaction with care.

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Psychosocial resources

Although the overwhelming majority of women who have a positive HPV test will not go on to develop cervical cancer, psychosocial guidelines that have been developed for addressing issues of anxiety and psychological distress in the context of cancer are useful for all health professionals.

The most comprehensive evidence-based guideline on psychosocial care is the 2003 Clinical practice guidelines for the psychosocial care of adults with cancerpublished by the National Breast Cancer Centre (now Cancer Australia).

This resource has been supplemented by:

Psychosocial Care Referral Checklist (2008)

Clinical Guidance for Responding to Suffering in Adults with Cancer (2014)

All of these resources can be accessed from Cancer Australia

For information and resources about sexual health see Health Direct Australia or refer to specialist sexual health services in your local jurisdiction.

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References

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