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Progress report on upcoming CervicalCheck patient-requested review process: planning a restorative approach for women who develop cervical cancer after screening

By Prof Noírín Russell, Clinical Director, CervicalCheck
and Gráinne Gleeson, Programme Manager, CervicalCheck

Purpose of patient-requested reviews  

After a woman develops cervical cancer, it is understandable that she may have questions about why previous cervical screening tests did not detect the cancer earlier. Every year in Ireland, 290 women are diagnosed with cervical cancer, 170 of whom have previously attended for screening. Each of these 170 women is eligible to request a review. This paper provides an update on the upcoming implementation of the newly-designed patient-requested review process within the CervicalCheck programme. We will update our website with further information when the review process becomes available to women. 

Introduction  

In October 2020, the HSE welcomed the publication of the Expert Reference Groups (ERG) Interval Cancer Reports. These reports were commissioned as an outcome of the Scally Review and included a recommendation to establish a process of patient-requested interval cancer review. The purpose of reviews is to support women (or their families) if a diagnosis of an invasive cervical cancer is made after participation in a screening programme. 

The reviews will be available for women who develop a screen-detected cancer or an interval cancer, because the boundary between these is not currently clearly defined in cervical cancer screening. All review outcomes will be shared with patients at a time of their choosing and in a compassionate and sensitive manner. In sharing the review findings we aim to avoid further compounding the trauma a diagnosis of cancer brings. 

Restorative approach  

The principles of a restorative approach are at the centre of our review process. This approach aims to bring all of those affected by an adverse event together in a safe and supported environment. Our patient advocates have advised of what are the key principles of the review process. These are: 

(i) preparing the woman in advance for the potential review findings 

(ii) ensuring a support person is available for patients during the process 

(iii) using simple language to explain review findings 

(iv) ensuring post-disclosure support available. 

Once a woman requests a review, she will be assigned a single named point of contact. The next important step is an introductory meeting with programme staff and the review facilitator. 

Process design elements – 

Introductory meeting  

The introductory meeting allows clinical staff to listen to the woman’s needs and to answer any general questions she may have. The aims of the introductory meeting are: 

  • To encourage each woman to tell her story and enable staff to acknowledge the upset she feels. 
  • To give each woman information to help her decide if she wants to have a review, and how and when she wants a discussion about the review findings.
  • To explain that we can estimate from other countries that for every 100 screening slides taken from women who have developed cervical cancer, around 60 of the slides will have a review result that is the same as their original slide result.
  • To explain that around 35 slides in every 100 slides reviewed will be deemed ‘satisfactory within the limitations of screening’ (this means the expert panel agrees that it is understandable that the abnormalities present were not seen during screening). 
  • To explain that around 5 slides in every 100 reviewed will be shown to be ‘unsatisfactory’. This means that for every 100 women who go through the review process, around 5 of them will be told that an error was made in the reading of their slide, and that a mistake was made that should not have happened. This mistake may have caused their cancer to be diagnosed at a much later stage. This can be devastating news to hear and it is essential to do our best to support those hearing this news. 
  • To reassure each woman that the review does not impact on treatment or prognosis and will not help guide any decisions her treating doctor will make.
  • To reassure women that requesting a review will not impact on relationships with care givers.
  • To explain that the best way to answer her questions is to review of all aspects of screening (call/recall; cytology (smear test) and histology slides; colposcopy) 
  • To share feedback from previous patients who found the experience of receiving the information did more harm than receiving the original news of a cancer diagnosis. 

Discussion meeting  

The discussion meeting allows clinical staff to go over any general questions about population screening. It also allows the clinician to discuss the results from the reviews and the clinical impact of these findings. Securing skilled, specially-trained experts for the discussion of reviews with patients is key. The aims of the discussion meeting are: 

  • To facilitate supported discussion of review findings and the resultant clinical impact 
  • To provide an opportunity for patients who develop an invasive cancer despite participation in screening to understand how this happens 
  • To provide some answers for women in a protected and compassionate space where they can discuss their experience with clinicians. This process has at its heart a restorative approach which involves openness, transparency, and healing.  

This process restores screening to its place in healthcare as a service which mainly does good but also acknowledges that some people do not benefit from this good. 

Patient-requested reviews – advice from engagement with members of 221+ Support Group

Monitoring systems

Review process outline 

Introductory correspondence & consent 

  • Initial communication between NSS Client Services dept acting (the review facilitators) and participant to discuss the PRR process and to confirm participant’s continued interest and validation of personal details. 
  • A letter is issued requesting signed authority to allow the NSS to access clinical records. 

Initial review 

  • Once signed authority is obtained, the review facilitator requests clinical records from the relevant hospital to confirm cervical cancer diagnosis. 
  • The Clinical Eligibility Review team review data pack to determine if the participant meets the criteria for review. If there is no evidence of a cervical cancer diagnosis and/or previous screening tests within the programme, a review is not possible. 
  • NSS Client Services contacts participants to communicate outcome of eligibility review. 

Introductory meeting 

  • A face-to-face meeting is held with eligible participants to discuss the process in more detail and confirm that the participant wishes to proceed. We invite women bring a support person to this meeting.
  • The introductory meeting allows clinical staff to listen to the woman’s needs and answer general questions about population screening,

Engagement with programme partners 

  • The review facilitator engages with screening laboratories and acute hospitals to retrieve requested cytology & histology slides, colposcopy notes and any additional relevant clinical records pertaining to the individual’s care. 

Holistic review of screening journey 

  • Programme Review: The CervicalCheck Programme reviews the administrative aspects of the screening journey (e.g. were invitations and reminder letters sent on time).
  • Cytology Review: Cytology slides are reviewed and categorised into (i) satisfactory, (ii) satisfactory with known limitations and (iii) unsatisfactory. The findings are approved by a consultant. A report is developed for each woman and is sent to NSS Client Services and to the originating laboratory. The cytology slides are returned to the originating laboratory.  
  • Histology Review: Histology slides are reviewed and categorised into (i) satisfactory, (ii) satisfactory with known limitations and (iii) unsatisfactory. The findings are approved by two consultants. A report is developed for each individual and is sent to the review facilitator and to the originating laboratory. The histology slides are returned to the originating laboratory. 
  • Colposcopy Review: Colposcopy records/clinic notes are collated and sent securely (electronically) to the NSS. These are reviewed in the NSS by an external colposcopy reviewer. A report is compiled by the external reviewer and sent to the NSS, which forwards it to the originating colposcopy clinic for information. 

Synthesis of review results 

  • The clinical team will synthesise review findings with clinical history to enable a highly personalised discussion and comment on whether overall screening was satisfactory. 

Results discussion meeting 

  • The review facilitator will bring together our CervicalCheck clinical team and the woman to discuss the review results and signpost to any further external support services needed. We again invite women to bring a support person to this meeting.

We will provide progress reports on the implementation of the new patient-requested review process to anyone who registers with us on our information line, Freephone 1800 83 21 88, or by emailing info@screeningservice.ie.

 

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