The NHS cervical screening programme audit of ... - Wiley Online Library

Commentary

DOI: 10.1111/j.1471-0528.2011.03144.x www.bjog.org

The NHS cervical screening programme audit of invasive cervical cancers: who benefits? EL Moss,a SM Sherman,b P Pearmain,c CWE Redmand a

Pan-Birmingham Gynaecological Cancer Centre, City Hospital, Birmingham, UK bSchool of Psychology, Keele University, Staffordshire, UK West Midlands Cervical Screening QA Reference Centre, University of Birmingham, Birmingham, UK dDepartment of Obstetrics and Gynaecology, University Hospital of North Staffordshire, Stoke on Trent, UK Correspondence: Mr CWE Redman, Department of Gynaecological Oncology, University Hospital of North Staffordshire, Newcastle Road, Stoke on Trent, ST4 6QG, UK. Email [email protected] c

Accepted 8 August 2011. Published Online 10 October 2011. Please cite this paper as: Moss E, Sherman S, Pearmain P, Redman C. The NHS cervical screening programme audit of invasive cervical cancers: who benefits? BJOG 2012;119:1–4.

Cervical cancer is largely viewed as a preventable disease evidenced by the success of the National Health Service cervical screening programme (NHSCSP) and as such, the development of a cervical cancer can be seen as an adverse incident requiring investigation. ‘Audit of Invasive Cervical Cancer’1 was published by the NHSCSP in 2006 to ‘define a national protocol for audit of cases of invasive cervical cancer in order that standardised data can be pooled and analysed meaningfully’. This followed the publication of a local audit that highlighted weaknesses in the cervical screening programme,2 and no doubt had the intention of allowing cervical screening audit to continue but without undue controversy. The invasive audit guidance came into effect in April 2007 and requires that all women diagnosed with a cervical cancer are offered the findings of a review into their cervical screening history. Despite the stated intention of publishing the national audit data annually the first publication has only just been published,3 reflecting operational difficulties in getting the process started and coordinating data collection across the country. There is also perceived to be a certain degree of reluctance from involved professionals with regards to the disclosure aspect of the audit. In the West Midlands region the QA Reference Centre reports that disclosure is mainly in selected women and does not appear to be happening at all in some Trusts. Studies outwith the audit process have investigated the development of cervical cancer and have identified a range of contributing factors, in particular patient compliance, cytological undercall and inappropriate gynaecological management;4 however, no studies have investigated the impact of disclosing screening programme problems to women who have been diagnosed with cervical cancer.

Why audit the cervical screening process? Overall, the NHSCSP is very effective, as both the incidence of cervical cancer and the number of associated deaths have decreased significantly since the introduction of the call and recall programme in 1988. However, incidence and mortality alone do not give a complete picture of the programme’s effectiveness and we do not know how effective the NHSCSP could be if all its activities were optimised; this can be addressed by audit. It was envisaged that audit of the personal screening histories of women diagnosed with cervical cancer would provide both valuable information and learning points for health professionals. The experience of undertaking this exercise at the University Hospital of North Staffordshire (UHNS) has recently been reviewed.5 The data confirmed that, although most women who developed invasive cervical cancer had had a smear at some point in the past, noncompliance was the principle contributing factor in nearly half of women, with lapsed attenders being the largest of the classification groups. The majority of these women were between 30 and 39 years of age, in keeping with the fall in screening coverage seen regionally in that age group over the past 10 years in the West Midlands. The review process can also be used as a quality assurance tool by monitoring the number of cervical cancers that occur because of false-negative cytology or inappropriate gynaecological management. Cytological screening does have a false-negative rate4 and although sporadic cases are to be expected, a cluster of cases can highlight departments where intervention or additional training is needed. Similarly, identifying women who have been seen in colposcopy

ª 2011 The Authors BJOG An International Journal of Obstetrics and Gynaecology ª 2011 RCOG

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and subsequently develop cervical cancer can also draw attention to areas of mismanagement or deviations from national guidance as well as to individual training needs.6 At a national level the data will provide a more strategic view of the screening history, diagnosis and treatment of women diagnosed with cervical cancer, which will support the development and evaluation of the programme. However, the national audit may have a greater impact on patient care by following the lead of obstetricians. The Confidential Enquiry into Maternal Deaths is a triennial confidential, anonymous and blame-free review of cases and has been a remarkable component of maternity services in the UK. These enquiries have been characterised by the systematic analysis of maternal deaths in an attempt to learn lessons and improve care. The data available from the national audit is already being viewed and used by QA Reference Centres in some regions, such as the West Midlands, in a similar manner for lessons to be learnt from substandard or inappropriate management, with the aim of reducing the incidence of such cases. The incorporation of this aspect of case review into the national audit with the publication of a triennial report, although time consuming, would help to maintain confidentiality because of the large number of cases and could enable lessons to be learnt, thereby demonstrating that the NHSCSP is doing everything possible to reduce the number of preventable cervical cancers.

Disclosure In addition to the professional aspects of the audit, the NHSCSP indicated that, on an individual basis, the acquired information should be shared with the women themselves as it was felt that they would want to know why and how they developed cervical cancer despite participating in the screening programme. The NHSCSP guidance, in terms of process or timing, was addressed in the document Disclosure of audit results in cancer screening: advice on best practice.7 The rationale for sharing the review results was, first, that women would want to have this information (i.e. there is an obligation to share this information); second, if women perceived that there was such a process, then they would see it as transparent and open; and third, if women received an apology or expression of sympathy for their present position then complaints or claims would be less likely. The Disclosure document identified many of the difficulties surrounding this issue, in particular it recognised the need for expertise in handling these meetings, which can be akin to breaking bad news scenarios, that these interviews can also be stressful for the clinicians involved and that training may be helpful. Timing of the interviews was discussed. It was considered inappropriate to introduce audit and screening history

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review in the initial consultation when the diagnosis is given, as women were likely to be focused on the implications of their illness and on treatment considerations. Instead it was recommended that ‘the conversation about the review of previous screening history should take place after treatment has concluded’. However, this can prove very difficult, especially with referral to specialist cancer centres, because women may be under the care of several hospitals and completion of treatment is not always communicated to the original diagnosing hospital who have the responsibility of conducting the review. In practice, the review is a time-consuming process, and the UHNS experience showed that the time to completion of the review was between 4 and 6 months with a further 2-month interval before the appointment to share the results. In the main, finding the right time for us was not an issue. In the UHNS series, only women who had participated in the NHSCSP were invited to discuss the outcome of the review, and, in addition, some women were not invited where marked poor compliance was the single contributing factor because it felt inappropriate to invite women to a meeting which ‘pointed a finger’ at them; in other words the invited group was relatively selected. Sixty-one percent of women diagnosed with cervical cancer in the UHNS cohort were given an appointment; however, only 40% of these chose to attend to discuss the outcome of their review. The reasons why this was are not understood. These meetings were usually conducted by the consultant gynaecological oncologist/colposcopist responsible for their initial care and diagnosis. The interviews were generously scheduled, leaving adequate time for discussion and to allow the dictation of a full summary of the conversation, which is sent to the woman, her general practitioner, the hospital cervical screening coordinator and the hospital medico-legal coordinator. It is not known whether women find this process helpful or not, or if legal claims, which do nonetheless still occur, are reduced. But could disclosure of the review results be harmful? Several studies that have examined the effect of disclosing unanticipated (harmful) outcomes of hospital care8 or misread biopsies9 have predominantly been concerned with the effect on the hospital and clinicians rather than any benefit or otherwise to the woman. One recent study did examine how the disclosure of adverse events affected hospital patients’ perception of their quality of care.10 Two findings are of particular relevance: first, women who had had adverse events disclosed to them were twice as likely to rank their care as good or excellent compared with those who had not had events disclosed to them; second, lower quality ratings were associated with events that still adversely affected the woman at the time of the survey. Extrapolating from this would suggest that for women who have had and are living with a cancer diagnosis


Audit of invasive cervical cancers: who benefits?

(i.e. still adversely affected by the misread smear or gynaecological mismanagement ‘event’) the perception of their quality of care will be diminished. There has been research on how oncologists communicate with their patients11 and this has often focused on certain aspects of the process, such as how people are given a diagnosis of cancer.12 One factor known to influence how much information people want about their condition and how they will react to it is their psychological coping style.13 ‘Monitors’ typically want more information and indeed seek it out, whereas ‘blunters’ prefer less information and are often information-avoidant. These individual coping styles are likely to play a role not only in how information imparted during the screening history review is received by women but also whether or not they choose to attend in the first place, with ‘blunters’ presumably less likely to accept an invitation to a review meeting. For those women who do attend, there is evidence that they do better psychologically and physiologically, when information they receive about their medical condition is tailored to their particular coping style. One caveat to this, especially pertinent to the screening review, is that in a study exploring coping styles in low-income minority women who had to undergo diagnostic colposcopy, a significant proportion of high ‘monitors’ (44%) blamed themselves for the onset of their abnormal cervical smear results.14 In the event of a woman who was both a high ‘monitor’ and a lapsed attender being invited for a screening history review meeting, great care would need to be taken not to cause unnecessary distress. Indeed a policy of selective invitation, not inviting women where compliance is the primary contributing factor, can be considered, however this would have to be very carefully defined to ensure that there was no subjectivity in the decision. Research is underway investigating these issues. Given the evidence that these women are already likely to be experiencing elevated levels of anxiety and depression as a result of having cervical cancer, it is especially important to consider any additional psychological burden that disclosure places on them. Bradley et al.15 found that survivors of cervical cancer (5–20 years after treatment) reported significantly more anxiety than survivors of a comparable (endometrial) cancer, and more dysphoria, anger and confusion than either endometrial cancer survivors or healthy controls. It would be helpful if further communication with patients did not unnecessarily exacerbate this fact. An awareness of individual differences such as coping styles would go some way to achieving this aim.

Concluding comments Clinicians, particularly in obstetrics and gynaecology, have long advocated the value of audit to learn lessons and improve practice, and sharing this information with other

professionals has always been pivotal to this process. The threat of litigation and loss of confidence that can occur with the publication of local cervical screening results potentially jeopardises future audit. To address the need for continued audit and to ensure openness and transparency, the NHSCSP has chosen a strategy of publishing national (and more anonymous) results while advocating personal disclosure to the individual women concerned. The national audit is a tremendously positive development that has the potential to provide valuable information on cervical cancer epidemiology with a view to reducing the risk of future cases, enabling the systematic evaluation of the cervical screening programme and having an immense education value for the professionals involved. Although it remains to be seen whether the implementation and data collection hurdles can be overcome, a more fundamental question remains unanswered; is universal unsolicited disclosure beneficial or detrimental to the wellbeing of the women concerned?

Disclosure of interest None.

Contribution to authorship EM, SS, PP and CR wrote the manuscript and all approved the final version.

Details of ethics approval None.

Funding None.

Acknowledgements None. j

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7 Department of Health. Disclosure of audit results in cancer screening advice on best practice. NHS cancer screening programmes. 2006. Cancer Screening Series No 3. [www.cancerscreening.nhs.uk/publi cations/cs3.pdf]. Last accessed 16 September 2011. 8 Lamb RM, Studdert DM, Bohmer RM, Berwick DM, Brennan TA. Hospital disclosure practices: results of a national survey. Health Aff (Millwood) 2003;22:73–83. 9 Pietro DA, Shyavitz LJ, Smith RA, Auerbach BS. Detecting and reporting medical errors: why the dilemma? BMJ 2000;320:794–6. 10 Lopez L, Weissman JS, Schneider EC, Weingart SN, Cohen AP, Epstein AM. Disclosure of hospital adverse events and its association with patients’ ratings of the quality of care. Arch Intern Med 2009;169:1888–94. 11 Fallowfield L, Jenkins V. Effective communication skills are the key to good cancer care. Eur J Cancer 1999;35:1592–7.

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