Quality Standards Advisory Committee 2. Children s attachment prioritisation meeting Breast cancer (update) post consultation meeting

Transcription

1 Quality Standards Advisory Committee 2 Children s attachment prioritisation meeting Breast cancer (update) post consultation meeting Attendees Minutes of the meeting held on Thursday 10 th March 2016 at the NICE offices in Manchester Standing Quality Standards Advisory Committee (QSAC) members Michael Rudolf (Chair), Barry Attwood, Gillian Baird (GB), Guy Bradley-Smith, Jean Gaffin, Jim Greer, Malcolm Griffiths, Ulrike Harrower, Tessa Lewis (TL), Amanda Smith, Ruth Studley Specialist committee members Children s attachment - Joanne Alper, Tony Clifford, Kim Golding, Jonathan Green, Cheryl Kimber, June Leat Breast Cancer (update) John Graham, Kieran Horgan, Jane Starczynski, William Teh, Ursula Van Mann NICE staff Nick Baillie (NB), Alison Tariq (AT) [agenda items 1-6], Gavin Flatt (GF) [agenda items 7-11], Craig Grime (CG), Nicola Cunliffe (NC) [agenda items 7-11], Lisa Nicholls (LN) [agenda items 1-6] Apologies NICE Observers Eileen Taylor Standing Quality Standards Advisory Committee (QSAC) members Ashok Bohra, Julie Clatworthy, Gavin Lavery, Anjan Ghosh, Robyn Noonan, Michael Fairbairn and Anita Sharma Specialist committee members Children s attachment Jane Barlow Breast cancer (update) Anna Armstrong, Nicola West Agenda item Discussions and decisions Actions 1. Welcome, TL and GB welcomed the attendees and the Quality Standards Advisory Committee (QSAC) members Quality Standards Advisory Committee 2 meeting 10 th March of 13

2 introductions and plan for the day (private session) introduced themselves. 2. Welcome and code of conduct for members of the public attending the meeting (public session) 3. Committee business (public session) No public observers in attendance. Declarations of interest TL asked standing QSAC members to declare any interests that were either in addition to their previously submitted declaration or specific to the topic(s) under consideration at the meeting today. TL asked the specialist committee members to declare all interests. The following interests were declared: Specialist committee members Tony Clifford head of a virtual school for children in care. Also involved in commissioning for school and member of the institute for recovery from childhood trauma Kim Golding clinical director of Kim S Golding ltd which provides specialist training, supervision and consultancy on children and families impacted by attachment difficulties Jonathan Green conducts research in this area and developed the Manchester Child Attachment Story along with other research publications mentioned in the NICE guidance June Leat chair of parents of traumatised adopted teens organisation 4. QSAC updates No updates were given. 5 and 5.1 Topic overview and summary of engagement responses 5.2 Prioritisation of quality improvement AT and CG presented the topic overview and a summary of responses received during engagement on the topic. TL and AT led a discussion in which areas for quality improvement were prioritised. Quality Standards Advisory Committee 2 meeting 10 th March of 13

3 areas The QSAC considered the draft areas as outlined in the briefing paper prepared by the NICE team. Assessment of attachment difficulties Supporting children in schools Interventions for parents and carers Interventions for children Access to mental health Additional areas 5.3 Prioritised area assessment of attachment difficulties The committee discussed the importance of having access to appropriately trained professionals who can do the assessments. There was a discussion on the general awareness and ability of health and social care practitioners to recognise potential attachment difficulties, the lack validated creening tools was discussed and reference was made to the research recommendation on screening tools made within NICE NG26. There was an acknowledgment that without being able to identify the population at risk of attachment difficulties in a measureable way subsequent aspects of the pathway would be difficult to achieve. It was discussed whether a placeholder statement for screening tools should be included. A specialist committee member highlighted the need for assessments to differentiate between developmental impairments or disorder and relational disturbances. NICE guideline 26 (NG26) recommendation was discussed as the basis of a quality statement. The committee felt it was a good summary of comprehensive assessment. The committee queried who carries it out and specialist members suggested that Child and Adolescent Mental Health Services (CAMHS) teams or specialist paediatricians were the most appropriate professionals. NICE team to draft a statement based on NG26 recommendation 1.3.2: that those referred to specialist services receive a comprehensive assessment. The committee specifically discussed asylum seeking children. Parents, carers should be present during assessment or testing to ensure the child is supported in what could be a stressful time. They can also provide input into the assessment itself. The committee agreed however that this was not sufficiently unique to warrant a separate quality statement, it would instead be captured in the equality considerations. NICE team to draft a statement on those referred to specialist services for having a comprehensive assessment before referral for intervention. Quality Standards Advisory Committee 2 meeting 10 th March of 13

4 5.3 Prioritised area supporting children in schools 5.3 Prioritised area interventions for parents and carers The committee discussed that all schools and their staff should be attachment aware but acknowledged the difficulties that exist in being able to measure this. The committee felt that raising awareness of attachment difficulties within schools should be highlighted throughout the document. The committee also discussed school behaviour policies and the high exclusion rates among children and young people with attachment difficulties. The committee discussed the role of the designated teacher for children in care and their responsibilities maintaining up to care educational plans. The committee highlighted that the role of the designated teacher was a statutory requirement for schools whose pupils included children in care but that requirement did not extend to those children identified as being on the edge of care. The committee discussed whether focussing on a designated teachers being responsible for up to date care plans could include ways to prevent school exclusions for those children as they felt that it was important for children with attachment difficulties have support to prevent permanent suspension or exclusion. NICE team to draft a statement on NG26 recommendation on up to date care plans, incorporating recommendation on preventing exclusions. The committee discussed the provision of interventions and intervention types for the different groups of people where attachment issues are a concern: parents, carers and children. The committee highlighted having accessible and informed practitioners to support children on their journey is important. The committee discussed children entering the care system being settled in their placements before interventions are provided and whether this was the best approach. The committee discussed focussing the provision of interventions on high risk groups, children being received into care and those being adopted as they are at risk of the poorest outcomes. They felt these groups should have access to interventions in a timely manner after care placement. The committee discussed placement management systems and video feedback programmes. Video feedback programmes were highlighted as an area for improvement as there is currently a lack of availability for preschool children with attachment difficulties. NICE team to draft a statement on up to date care plans which includes how to support children to prevent permanent suspension or exclusion. NICE team to draft the following statements. 1) Interventions for parents/carers of children in high risk groups. 2) Intensive training and support for foster and adoptive parents 3) Explore drafting a statement on interventions for adolescents. Quality Standards Advisory Committee 2 meeting 10 th March of 13

5 The committee were asked which group of children and young people were at highest risk, they highlighted that teenagers or those in their adolescent period were a high risk group and the provision of interventions for this group should be considered. The committee discussed whether to prioritise a statement on a type of intervention, some members felt this would narrow the type of interventions that could be provided, they discussed the acknowledgement within the guidance that further research is required around other interventions for attachment difficulties and that video feedback programmes are the current intervention of choice. The committee decided that a statement on offering video feedback to parents or carers of children in high risk groups should be prioritised. They also decided that further statement should be prioritised on the provision of intensive training and support for foster carers and questioned whether there was need to make reference to this being done in conjunction with group therapeutic play sessions for children in the care system group. 5.3 Prioritised area interventions for children 5.3 Prioritised area access to mental health This area was discussed as part of the previous discussion on interventions for parents and carers. The committee discussed accessing services, referrals to specialists and the relationship between attachment difficulties and complex trauma. The committee discussed research into attachment and complex trauma but acknowledged this is a research recommendation within NICE NG26. The committee highlighted that there needs to be consistency between the use of the term mental health and mental illness. The committee discussed that currently children with mental health issues are often not accepted for assessment and interventions by CAMHS services. The committee discussed NG 26 recommendation on access to support and on having equal access but felt there was not a specific action for mental health issue that could be focussed on NICE team to ensure equal access for interventions regardless of mental health issues to be included in the equality and diversity sections of drafted statements. NICE team to ensure equality and diversity sections of statements refer to equality of access. Quality Standards Advisory Committee 2 meeting 10 th March of 13

6 5.3 Additional areas The committee reviewed a number of additional areas for quality improvement as suggested by stakeholders. These were: Staff training and supervision A statement was not prioritised. Quality standards do not define the training and supervision requirements for professionals within a topic area. Equalities A statement was not prioritised. This will instead be considered for each statement. Dissociative identity disorder recognition A statement was not prioritised. This is not within the scope of the quality standard. 5.4 Overarching outcomes 5.5 Equality and diversity 6. Next steps and timescales (part 1 open session) 7. Welcome and code of conduct for members of the public attending the meeting (public session) 8. Committee business EPAC forms A statement was not prioritised. This is not within the scope of the quality standard. The NICE team explained that the quality standard would describe overarching outcomes that could be improved by implementing a quality standard on children s attachment. It was agreed that the committee would contribute suggestions as the quality standard was developed. The NICE team explained that equality and diversity considerations should inform the development of the quality standard, and asked the committee to consider any relevant issues. It was agreed that the committee would contribute suggestions as the quality standard was developed. AT outlined what will happen following the meeting and key dates for the children s attachment quality standard. The Chair welcomed the public observers and reminded them of the code of conduct that they were required to follow. It was stressed that they were not able to contribute to the meeting but were there to observe only. They were also reminded that the Committee is independent and advisory therefore the discussions and decisions made today may change following final validation by NICE s guidance executive. Declarations of interest The Chair asked standing QSAC members to declare any interests that were either in addition to their Quality Standards Advisory Committee 2 meeting 10 th March of 13

7 (public session) previously submitted declaration or specific to the topic(s) under consideration at the meeting today. The Chair asked the specialist committee members to declare all interests. The following interests were declared: Standing committee members None Specialist committee members John Graham Director at the National Collaborating Centre for Cancer this post is funded through a contract with NICE to produce NICE s clinical guidelines. Principal investigator for the following ongoing clinical trials in prostate cancer - i) Custirsen funded by OncoGenex Technologies Inc and Teva Pharmaceutical Industries Ltd. ii) Orteronel Affinity Trial funded by Millenium Pharmaceuticals Inc. iii) Radium-223 funded by Bayer Health Care. Principal investigator for the following ongoing clinical trials in breast cancer: i) Two trials of radium-223 funded by Bayer Health Care. Principal investigator for 8 ongoing clinical trials in breast and prostate cancer run via the National Cancer Research Network (not pharmaceutical industry funded). Member of the trial management groups for one breast cancer trial (Supremo) and 2 prostate cancer trials (RT01 and CHHIP). All are closed to recruitment but continuing to report trial results and a council member of the South-West England Clinical Senate. Jane Starczynski presented for Roche Pharma, Roche Tissue Diagnostics, Abbott, DAKO, Leica Advisory Boards: Roche Pharma and AstraZeneca. William Teh received honorarium for lecturing for Hologic and Devicor 9. Recap of prioritisation exercise Minutes from the last meeting The committee reviewed the minutes of the last meeting held on Thursday 11 th February and confirmed them as an accurate record. GF presented a recap of the areas for quality improvement discussed at the first QSAC meeting for breast cancer (update): At the first QSAC meeting on 12 th November 2015 the QSAC agreed that the following areas for quality improvement should be progressed for further consideration by the NICE team for potential inclusion in the draft quality standard: Quality Standards Advisory Committee 2 meeting 10 th March of 13

8 Triple diagnostic assessment Preoperative MRI Gene expression profiling Assessment of ER and HER2 status Assessment of metastatic disease Key worker Exercise (placeholder) 10.1 and 10.2 Presentation and discussion of stakeholder feedback and key themes/issues raised The full rationale for these decisions is available in the prioritisation meeting minutes which can be found here: Committee/QSAC2/QSAC-2-minutes-12-Nov-15.pdf. GF presented the committee with a report summarising consultation comments received on breast cancer (update). The committee was reminded that this document provided a high level summary of the consultation comments, prepared by the NICE quality standards team, and was intended to provide an initial basis for discussion. The committee was therefore reminded to also refer to the full list of consultation comments provided throughout the meeting. The committee was informed that comments which may result in changes to the quality standard had been highlighted in the summary report. Those comments which suggested changes which were outside of the process, were not included in the summary but had been included within the full list of comments, which was within the appendix. These included the following types of comment: Relating to source guidance recommendations Suggestions for non-accredited source guidance Request to broaden statements out of scope Inclusion of overarching thresholds or targets Requests to include large volumes of supporting information, provision of detailed implementation advice General comments on role and purpose of quality standards Requests to change NICE templates 10.3 Discussion and The committee discussed each statement in turn and agreed upon a revised set. These statements are Quality Standards Advisory Committee 2 meeting 10 th March of 13

9 agreement of final statements not final and may change as a result of the editorial and validation processes. Draft Quality Statement 1: People with suspected breast cancer referred to specialist services receive the triple diagnostic assessment in a single hospital visit The committee discussed stakeholder comments supporting this as an area for quality improvement. The committee asked for the text in the patients, service users and carers audience descriptor to be changed to examination, breast imaging and biopsy if indicated. NICE to progress with this statement and update the audience descriptor. Draft Quality Statement 2: People with biopsy-proven invasive breast cancer or ductal carcinoma in situ (DCIS) are not offered a preoperative MRI scan without specific clinical indication The committee discussed stakeholder comments in this area and reiterated that too many people are having unnecessary MRI scans. NICE to progress this statement with amended wording The committee agreed to progress with the statement but amend the wording slightly to include unless there are specific clinical indications instead of without specific clinical indication Draft Quality Statement 3: People with oestrogen receptor-positive (ER-positive) human epidermal growth factor receptor 2-negative (HER2-negative) or lymph node-negative early breast cancer have gene expression profiling and expanded immunohistochemistry tests NICE to progress the statement with amended wording The committee agreed with stakeholder comments that this statement should be amended to be clear that gene profiling is recommended for people whose breast cancer is ER positive, HER2 negative and lymph node negative in line with the guideline wording (and not or lymph node-negative). Following feedback the committee also agreed to include intermediate risk in line with the guideline. A description of what is meant by intermediate risk will be included within the supporting information. The committee also agreed that currently NICE guidance only recommends gene expression profiling and not expanded immunohistochemistry tests so only gene expression profiling should be referenced. The supporting information will also refer to Oncotype DX being the only gene expression profiling test currently recommended by NICE, although other tests can be added when also recommended The committee discussed whether the statement should read offer rather than have and agreed that it Quality Standards Advisory Committee 2 meeting 10 th March of 13

10 has to be offer because an appropriate discussion needs take place with the patient, the rationale being that the patient has to agree to chemotherapy. The committee highlighted that this gene expression profiling aids decision making as to whether or not chemotherapy is indicated. Genetic testing Stakeholders were asked a question at consultation: are there other areas of genetic testing for breast cancer that should be covered in this quality standard and if so, what is the supporting evidence for these? The committee discussed BRCA mutation and suggestions to focus a statement on testing for the mutation in people with a family history or referring those with confirmed mutation. The committee discussed offering patients eligible for genetic testing the opportunity to discuss this with a specialist genetic service. The committee thought that this was good clinical practice and NICE Pathways makes it easy to identify at risk patients and when to refer them on. The committee acknowledged that pressure on genetic services results in patients waiting longer to be assessed. However the committee ultimately agreed not to progress a statement given current practice and the difficulties in identifying specific populations. The committee discussed the possibility of a statement around the referral of those with a confirmed mutation, but agreed that the problem still related to the initial identification and testing of people with a family history, and that it was not possible to word an appropriate statement Draft Quality Statement 4: People with newly diagnosed invasive breast cancer and those with recurrent breast cancer (if clinically appropriate) have the oestrogen receptor (ER) and human epidermal growth factor receptor 2 (HER2) status of the tumour assessed NICE to progress with the statement The committee noted that the main area for quality improvement related to those with recurrent disease, but that it would be sensible to include those with newly diagnosed disease for the time being. The committee was informed that the invasive cancer guideline recommendation will soon be updated and that this quality statement would then be revised. The Committee agreed to progress this statement along with the supporting definition of clinically appropriate from QS12 in the knowledge this will be reviewed once the updated NICE guidance is published Quality Standards Advisory Committee 2 meeting 10 th March of 13

11 Draft Quality Statement 5: People with breast cancer who develop metastatic disease are assessed by a multidisciplinary team The committee acknowledged stakeholder comments that there is variation in current practice. The committee suggested changing the wording to have their treatment and care managed by a MDT as a more action focussed statement. The committee also confirmed that this statement specifically highlighted those who develop metastatic disease (and not all recurrent disease) as this is the group where current practice shows variation. NICE to progress the statement and update as per discussions Draft Quality Statement 6: People with locally advanced, metastatic or distant recurrent breast cancer are assigned a key worker NICE to progress with the statement The committee acknowledged stakeholder comments that there is variation in current practice. It was queried whether the phrase key worker should be replaced with clinical nurse specialist, however it was agreed that the term is used in peer review across all cancers and also in the guideline. The committee highlighted that specialist therapeutic radiographers should be included in the audience descriptors. The committee agreed to progress the statement. Draft Quality Statement 7 (placeholder): Exercise for people with breast cancer At the last meeting the committee highlighted this as a potential quality improvement area and noted feedback from stakeholders. The specialist members felt that although this is an important area it is more than just exercise; it includes nutrition and other lifestyle factors. Specialist members also highlighted the lack of sufficient and consistent evidence to show that healthcare professionals giving advice about exercise improves health outcomes for people with breast cancer. This placeholder statement will not be progressed. The committee agreed to not progress this statement. Chemoprevention A question was asked at consultation to stakeholders: is there any evidence to suggest that there is a variation in offering chemoprevention to women who have an increased risk of breast cancer, and in the use of drugs such as tamoxifen in premenstrual women? If so, should a statement on these Quality Standards Advisory Committee 2 meeting 10 th March of 13

12 areas be included in this quality standard? The committee discussed stakeholder feedback and it was also noted that there is difficulty in identifying the population. After a lengthy discussion, it was agreed that this was not an appropriate area for quality improvement at the present time. The committee agreed to not progress this statement. Additional areas suggested by stakeholders The committee discussed additional areas suggested by stakeholders: Prescription of bisphosphates for postmenopausal women with early invasive breast cancer to reduce the risk of bone metastases This is not currently supported by NICE or NICE accredited guidelines. Reducing the risk of breast cancer recurrence This is an extremely broad area and too far reaching for a single specific statement. Referring people with breast cancer to fertility specialists There is a separate fertility quality standard. Choice of surgery for patients requiring mastectomy This was discussed at the prioritisation meeting where it was agreed that whilst this is an important issue, it is being addressed by the update to the guidance and therefore should not be developed as a quality statement at this time. Surgical techniques to reduce physical trauma for lymph node sampling As previous suggestion Breath hold for radiotherapy Not currently supported by NICE or NICE accredited guidelines. Advising patients on a number of aspects of their breast cancer care including self-referral to breast cancer services, self- examination, prevention of lymphoedema and the importance of health living e.g. rest and exercise These are extremely broad area and too far reaching for a single specific statement. Primary prevention of lymphoedema, specifically perioperative treatment and advice Not currently supported by NICE or NICE accredited guidelines. Provision of information for people with breast cancer on appropriate trials and opportunities to contribute to research which may benefit future patients Quality Standards Advisory Committee 2 meeting 10 th March of 13

13 Provision of information is covered in the patient experience quality standard. Opportunities to donate tissue Not currently supported by NICE or NICE accredited guidelines Overarching outcomes 11. Equality and diversity 12. Next steps and timescales (part 1 open session) 13. Any other business (part 2 Private session) The NICE team explained that the quality standard would describe overarching outcomes that could be improved by implementing a quality standard on breast cancer (update). It was agreed that the committee would contribute suggestions as the quality standard was developed. The NICE team explained that equality and diversity considerations should inform the development of the quality standard, and asked the committee to consider any relevant issues. It was agreed that the committee would contribute suggestions as the quality standard was developed. NC outlined what will happen following the meeting and key dates for the breast cancer (update) quality standard. The following items of AOB were raised: GB asked the team why topic experts are not sent the standards to comment on, the Chair explained that the topic expert provides a presentation to committee to outline the subject area, they are not included to influence decision as a member would be. The Chair thanked the specialist committee members for their input into the development of this quality standard. Date of next QSAC 2 meeting: Thursday 14 th April. Quality Standards Advisory Committee 2 meeting 10 th March of 13