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• Breast Screening Saves Lives

  

  The National Screening Unit (NSU) wishes to emphasise the benefits of breast screening in saving lives, in response to recent articles in the British Medical Journal (BMJ).

  The BMJ articles, based on research from a group in Denmark, questioned the effectiveness of breast screening. The opinions of the Danish researchers are refuted by a range of high-quality studies and the real-life experience of screening programmes in the UK, Australia and New Zealand – all of which demonstrate that the benefits of breast screening are unequivocal.

  Evidence of effectiveness includes:

  • a 1993 meta-analysis of randomised trials of breast screening that showed a 24 percent reduction in breast cancer mortality among all women invited for screening
  • a 2002 review by the World Health Organization’s International Agency for Research on Cancer that determined there is a 35 percent reduction in breast cancer mortality among screened women aged 50 to 69 years
  • a review by the United States Preventive Services Task Force, published in 2009, that concluded there is convincing evidence of reduced mortality from screening mammography
  • a full evaluation of the breast screening programme in Australia, published in 2009, that concluded the programme had been successful in reducing mortality from breast cancer for those in the target age range of 50 to 69 years, by approximately 21 to 28 percent.

  The NSU is also sounding a further note of caution about the use of thermography as a breast cancer screening or diagnostic tool.

  Thermography is currently being marketed to women and general practitioners in New Zealand. The NSU, the Cancer Society of New Zealand, the New Zealand Breast Cancer Foundation and the New Zealand branch of The Royal Australian and New Zealand College of Radiologists do not support the use of thermography as a breast cancer screening or diagnostic tool as there is insufficient evidence to do so. To date, there has been no satisfactory, large scale, prospective, statistically valid, randomised controlled trials assessing the value of breast thermography. All recent literature has been anecdotal evidence, cohort studies or papers discussing technical issues related to the technology being used.

  The concern is that women who undergo thermography may delay visiting their doctor with a significant symptom, or attending for screening mammography, if they believe that thermography is an adequate replacement for a visit to their doctor or a mammogram. 

  The NSU, the Cancer Society of New Zealand, the New Zealand Breast Cancer Foundation and the New Zealand branch of The Royal Australian and New Zealand College of Radiologists believe providers offering thermography to women must fully inform them of the potential harms, including the likelihood of false negative and positive results, how much it costs, and the lack of proof of its effectiveness as a screening tool.

  Statements on the effectiveness of screening and thermography including a full list of references are available.

• Dr Julia Peters Appointed Chief Advisor Screening

  

  The NSU is pleased to announce the appointment of Dr Julia Peters to the role of Chief Advisor Screening. Julia will lead the establishment of a Clinical Governance Group for the NSU. The group will advise and support the programmes for which the NSU is responsible.

  Julia is a Public Health Physician and the Clinical Director for the Auckland Regional Public Health Service. Prior to becoming a Public Health Physician she was a General Practitioner and also spent a number of years working in Papua New Guinea.

  Julia is no stranger to the NSU - her background in screening dates back to 1998 with the establishment of the National Breast Screening Programme and the Ministerial Inquiry into systemic failures within the National Cervical Screening Programme. Julia took a lead role in the initial design and establishment of the NSU and the implementation of many of the recommendations from the Ministerial Inquiry, in particular supporting the initial drafting of revised cervical screening legislation. 

  After leaving the NSU, she was the public health advisor to the Cervical Cancer Audit that reported its findings in 2004.

  Julia will provide strategic public health advice to the NSU on all its programmes, not just those that involve cancer screening. She acknowledges that screening programmes are very complex and require constant vigilance to ensure that high quality is maintained and systemic issues are promptly identified and addressed. She has a particular interest in ensuring that good decisions are made with respect to screening and that every effort is made to maximise the population benefits from our investment in screening.

  Julia will be available to the NSU on a part-time basis whilst continuing her role with the Auckland Regional Public Health Service.

• Newborn Hearing Screening – Jackson’s Story

  

  Ashburton baby Jackson Reed was just two days old when possible problems with his hearing were first identified.

  Jackson was born in Christchurch Hospital in June 2009. His mum Anna says she and husband Hayden were offered a routine hearing test for Jackson, as part of the Universal Newborn Hearing Screening and Early Intervention Programme. The programme is designed to pick up hearing loss early so help and support can be offered as soon as possible.

  “The first test indicated a possible problem, so we were asked back for another test about six weeks’ later.

  “We went back to Christchurch Hospital for the second test and it became clear Jackson had a hearing issue of some sort. That was scary, because we didn’t know the extent of the problem.”

  Further tests confirmed Jackson had hearing loss.

  “Being told about Jackson’s hearing was quite overwhelming at the time, but now we know it’s not so bad, it’s not going to hold him back in life.”

  Moulds of Jackson’s ears were taken (“keeping him still was a challenge!”), and he received a hearing aid.

  Anna says without the hearing aid Jackson can still hear, but it is like being underwater – he doesn’t hear clearly.

  “Whereas with his hearing aid, he can hear the same as anyone else. Because his hearing loss was detected early his language development won’t be held back.”

  Anna is very grateful for the support of Sue, their Advisor on Deaf Children, who sees Jackson regularly and will continue to do so until he is 18. Sue works for the Ministry of Education’s Special Education Services and gives specialist support and guidance to Jackson and his family.

  “When Jackson goes to a preschool and then on to school, Sue will make sure everything he needs to accommodate his hearing loss is in place.”

  Anna’s message to parents about the newborn hearing test is simple.

  “If you are in doubt whether to agree to the test, I’d say just do it. And if you need to go back for another test, make sure you do.

  “Because Jackson’s hearing loss was picked up early, he won’t suffer from a speech delay later on. We had no history of hearing loss in the family, so no reason to suspect there might be anything wrong.

  “Even if your child is found to have a hearing problem, it doesn’t have to be a huge disability. Because his was picked up early, Jackson is doing just fine.”
  

• Toward a Consistent Approach to Nuchal Translucency Measurement for 1st Trimester Combined Screening

  

  A Nuchal Translucency Working Group has been formed to provide advice to the NSU about how to improve the quality and consistency of ultrasound scanning for 1st trimester combined screening for Down syndrome and other conditions throughout New Zealand. The group will make recommendations about policy, guidelines and quality standards, advise on equity of access issues and assist in the development of an audit and monitoring framework.

  Members of the Working Group are Rachael McEwing (Chair) representing the Royal Australian and New Zealand College of Radiologists (RANZCR) and the Australasian Society for Ultrasound Medicine (ASUM), Linda Ashley representing RANZCR and Tracey Cadogan representing ASUM.  The NZ Institute of Medical Radiation Technology has also been invited to nominate a representative to join the group.

  At its first meeting, the group addressed a range of issues relating to ultrasound that have arisen during the implementation of the new approach to 1st trimester combined screening for Down syndrome and other conditions. The group also agreed to conduct a survey of ultrasound providers to gain an overall picture of the sector, to inform their work.

  The Nuchal Translucency Working Group will conclude in June 2011.
  

• Bowel Cancer Screening Pilot Confirmed

  The Minister of Health has confirmed that a four-year pilot will begin next year to assess whether New Zealand should introduce a national bowel cancer screening programme. The Minister of Health gave the green light to the pilot in a 2010 pre-budget announcement. The Government will provide $24 million funding over four years. The pilot follows the generally accepted practice of testing a screening programme with a smaller population before making any decision to adopt it nationally.

  It is expected the pilot will begin by late 2011, and will run in one or two District Health Board (DHB) areas with a minimum sample population of 60,000, including at least 6000 Māori. Eligible people aged 50 to 74 years living in the DHB area will be invited for screening once every two years during the pilot.

  No decision will be made on implementing a national bowel cancer screening programme until the pilot is completed in 2015 and all monitoring and evaluation data has been analysed. This will determine the level of participation, the number of cancers that were detected, the stage of the disease at diagnosis, the impact on health services and the costs involved. A bowel cancer screening programme will not be part of the NSU until it becomes a national programme.

  The Ministry of Health will shortly call for expressions of interest from DHBs wishing to submit a proposal to establish and operate the pilot. The pilot will follow the most common model used for population-based screening programmes overseas.

  This involves a central organisation mailing a faecal occult blood test to all eligible people which they can complete in their own home and post to a laboratory for assessment. A person with a negative result will be recalled in two years for a repeat test. A person with a positive result will be followed up and offered a diagnostic colonoscopy.

  Bowel screening programmes are either running or are being piloted in Australia, the United Kingdom, most countries in the European Union, Korea, Japan, Israel and parts of Canada.

  For queries or further information, please contact: Mhairi Porteous, Bowel Cancer Programme Manager mhairi_porteous@moh.govt.nz

• National Cervical Screening Programme - Smear Taker News

  Changes to NCSP Register Administration
  From 1 July 2010, the administrative and technical support functions of the National Cervical Screening Programme Register (NCSP Register) will be assumed by Datam, a subsidiary of the NZ Post Group.

  Management and accountability for the NCSP Register will remain with the Ministry of Health. Clinical functions of the NCSP Register are not affected by this change - clinicians will be able to continue to access information from the NCSP Register as they currently do, and clinical advice will continue to be available from the NCSP Clinical Leader. All personal information will continue to be stored securely and confidentially.

  The Ministry of Health anticipates a number of efficiencies from this process including enhancements to the technology, improvements in programme monitoring and interface with primary care.

  The Ministry has confidence in the technical capabilities and information security arrangements of the NZ Post subsidiary, as well as its commitment to maintaining the highest standards for the NCSP Register.

  The Register Central Team is still available on 0800 50 60 50. For any clinical queries please contact Hazel Lewis (04)816 4343 hazel_lewis@moh.govt.nz

  HL7 Messaging
  From 1 July 2010 all laboratories contracted to provide NCSP cytology, histology and HPV testing services will be using Health Level Seven (HL7) messaging to report results directly onto the NCSP Register, instead of sending results on physical media. HL7 messaging is a secure network protocol that allows exchange of information in real time between the NCSP Register and health providers.

  Information required on laboratory referral forms
  Smear takers are reminded that it is essential to complete information on laboratory referral forms in full.

  As well as the usual patient details, demographic information must include the woman’s:

  • NHI number
  • postal address (including post code) 
  • ethnicity (self-identified by the woman).

  Smear taker information must include:

  • the smear taker’s registration (ID) number
  • the health facility identifier (ID) number.

  This information is essential for accurate coverage, quality of smear, overdue and recall reports. As laboratories must provide these details to the NCSP Register as part of their HL7 messaging requirements, complete information on the form avoids the need for follow-up calls to smear takers.

  All referral forms must include relevant clinical information, including appearance of the cervix, symptoms and relevant gynaecological history. Full requirements for completing laboratory referral forms can be found in the NCSP Operational Policy and Quality Standards Section 4. Note that electronic referral forms should also include requests for HPV tests as per the Guidelines.

  A reminder also, when referring to colposcopy, to ensure that all relevant clinical information as well as the laboratory results (cytology and/or HPV testing) are included as part of this referral. If a woman has a smear assessment as 'suspicious of cancer or cancer' she must be urgently referred for assessment and this should be indicated as such in the letter of referral.

  NCSP Register Reports to Practices
  From July 2010, the Quality of Smears reports will be routinely sent to all smear takers on the NCSP Register twice a year:

  • in July, giving data for the previous six month period to 30 June
  • in January, giving data for the previous 12 month period to 31 December.

  Reports are also available on request by contacting your Regional Co-ordinator on 0800 729 729.

  This report provides information on the number and quality of smears taken for NCSP participants. It shows performance against NCSP Operational Policy and Quality Standards and also provides a comparison with relevant DHBs and national performance.

  Cervical Smear Reports and Smear Taker Recall reports are now being sent out monthly to those practices that wish to receive them.

  Women who ‘do not respond’ to Smear Taker Recall
  When a woman has not responded to recall for a cervical smear, she will continue to appear on Overdue Cervical Smear Reports for a period of 90 days. The NCSP will send two reminder letters, however the NCSP does not need to be informed if the woman does not respond. Please continue with the current practice of recording this information in the woman’s record at your facility, as this forms the audit record.

  Overseas Test Results
  The NCSP is a national programme and only applies to women residing in New Zealand. Women returning to New Zealand after being overseas are likely to return having had cervical screening while living overseas. 

  The results of cervical smear tests taken overseas are not forwarded to the NCSP Register by overseas programmes.  Additionally, while a woman is overseas the NCSP is unable to track her screening history or provide a back-up role.

  While it is acknowledged that a woman’s past overseas cervical screening history is important, it is the New Zealand smear taker’s clinical responsibility to decide a woman’s screening interval and recall within the NCSP standards and guidelines.  The NCSP Register is a tool to support the NCSP to recall, remind and provide screening histories. Overseas test results are not added to the woman’s screening history on the NCSP Register. Laboratory recommendations may therefore not necessarily reflect the woman’s entire past clinical/screening history. 
  

• Screening for Galactosaemia

  

  Newborn metabolic screening is offered free for all babies born in New Zealand. Each year, about 45 New Zealand babies are found to have a metabolic disorder. Although these disorders cannot be cured, early treatment with medication or a special diet can help a baby stay well and prevent severe disability or even death.

  In this issue of Screening Matters we continue our series of articles about the disorders screened for, with a focus on Galactosaemia. 

  Galactosaemia is an autosomal recessively inherited disorder that prevents the normal processing of lactose (milk sugar). Lactose is usually broken down into glucose and galactose, and the galactose is then converted to glucose for use as energy. Babies with galactosaemia lack an enzyme necessary to complete all the steps in this pathway. This leads to an accumulation of galactose, or metabolites of galactose, in the blood and tissues.

  Without treatment, babies with classical galactosaemia rapidly develop hypoglycaemia, hepatic and renal damage, sepsis, and cataracts. About 80 percent of cases show distinct symptoms in the first two weeks of life, including lethargy, vomiting, jaundice and sepsis. The remaining cases exhibit more insidious symptoms, such as vomiting, diarrhoea, failure to thrive, hepatomegaly, ascites and cataracts.

  There are several variants of the galactosaemia gene. Some mutations lead to more severe symptoms.

  One mild variant of the galactosaemia gene, the Duarte gene, is common. Among carriers of one Duarte and one normal gene, enzyme activity happens at about 75 percent of normal levels. Among compound heterozygotes (carriers of one galactosaemia gene and one Duarte gene) enzyme activity happens at about 25 percent of normal levels. Incidence of this is about one in five hundred. In some cases, a screening test may indicate abnormal galactose metabolites in a baby’s blood and reduced levels of enzyme activity, but the baby will not display any symptoms, be lactose intolerant or require treatment.

  Screening may also detect a deficiency of two other enzymes involved in galactose metabolism. These are both much rarer than classical galactosaemia and cause cataracts, not acute illness.

  Early intervention can prevent or reverse the acute problems of galactosaemia. However, approximately half of affected individuals may suffer some degree of learning difficulties and may have delayed speech, even when there has been no delay in diagnosis.

  Screening
  Blood is tested for levels of galactose metabolites (galactose and galactose-1-phosphate).

  Action
  Slightly abnormal result
  If lead maternity carers (LMCs) receive a letter from the laboratory advising of a slightly abnormal
  galactosaemia result, they should:

  • contact the laboratory if they require further information
  • contact the family and inform them of the screening result
  • evaluate the baby: some babies may show no symptoms, but if the disorder is more severe, symptoms may include vomiting, diarrhoea, failure to thrive, hepatomegaly, ascites and cataracts\
  • with family consent, take a repeat sample and send it to the laboratory as soon as possible
  • support the family by providing information about the reasons for a slightly abnormal result and the disorder
  • notify the family of the results of the repeat sample.

  Significantly abnormal result
  If LMCs are phoned by the laboratory and informed of a significantly abnormal galactosaemia result, they should:

  • be guided by the laboratory staff regarding the baby’s condition: if a baby is symptomatic they may advise immediate paediatric referral
  • contact the family immediately and inform them of the screening result
  • with family consent, take a repeat sample and send it to the laboratory as soon as possible
  • support the family by providing information about the reasons for a significantly abnormal result, diagnostic testing and the disorder.

  Treatment
  Babies with galactosaemia are cared for by a clinical team which includes a paediatrician, physiotherapist, dietician and social workers. Treatment for all forms of galactosaemia is a diet without milk or milk products. The baby will not be able to breastfeed or drink cow’s milk, and will need a soy or other special milk substitute.

  Treatment completely prevents or reverses only the acute problems. Some affected individuals will suffer some degree of learning difficulty and may have delayed speech, even when there has been no delay in diagnosis. Most affected girls suffer some degree of hypogonadotrophic hypogonadism (defective gonadal development or function, or failure of ovaries to develop properly).