Comments Table with Responses from Developers

Transcription

1 Natioal Istitute for Health ad Cliical Excellece ADHD Cosultatio 31 st Jauary 27 th March 2008 Commets Table with Resposes from Developers Status = Registered Stakeholders PR = Ivited Expert Peer Reviewers Sectio Commets Resposes Status Orgaisatio ADDISS 1 Geeral I have had a brief look at the draft guidelie, at least i relatio to educatio. My view is that it provides a iterestig ad potetially useful review of research but is rather thi i its school focused recommedatios. For istace, I would have liked to have see a much stroger positio i relatio to multi-agecy collaboratio ad I feel it might reasoably have referred to specialist educatio staff ad special schools. I'm ot sure that health professioals are best placed to give advice o SEN without the collaboratio of educatioal professioals, for istace. Nevertheless, its emphasis o improved traiig for teachers is welcome although practicalities will always ted to make this difficult to put i place. ADDISS Whilst the guidelie recommeds traiig for all professioals who come ito cotact with ADHD, at preset there are ot eough psychiatrists, i child ad adult metal health traied to meet the eed, or eough elighteed GP s who are willig to refer. As log as the guidelies o traiig are followed, the the recommedatio is a positive step forward. ADDISS 3 Full The guidelie suggests that SENCO s should assess the child whe disordered coduct ad possible ADHD is preset ad the refer parets to a local paret traiig programme. SENCO s must have appropriate ADHD traiig as ot all ADHD Thak you for your commet. A ew recommedatio has bee added to emphasize multi-agecy collaboratio. Thak you for your commet. The recommedatio has bee modified. The itet of the recommedatio is for SENCO s childre with a coduct problem (ad possible ADHD) to cotact the parets ad to iform them about paret traiig programmes. 1

2 Status Orgaisatio ADDISS 4 Full ADDISS 5 Full ADDISS 6 Full Sectio Commets Resposes childre preset with a coduct problem. Would they be able to suggest to parets that a medical assessmet might be beeficial? GPs are ot geerally kowledgable eough to assess whether or ot a child has mild, moderate or severe symptoms. This meas that may childre will be waitig a log time for a referral. Referral to a paretig programme at this poit may result i parets ot comig back to seek help for their child. A geeric paretig programme is ot always helpful for childre with ADHD type behaviours. Maagemet of childre with ADHD i a school has more to do with the attitude of the teacher, the headteacher ad the whole school. Those of us who work with schools, teachers ad families have see positive improvemets from chages i policies to maage behaviour rather behavioural itervetios themselves. We have see chages i attitude towards the child have a kock o effect i chagig the behaviour of the child. It is more helpful if the traiig programme is ADHD specific ad if the same pricipals ca be applied to maagig the behaviour i school. There are programmes which are desiged for use by parets ad schools together. ADDISS Who is goig to make a decisio about what is moderate. What criteria will be used. Will moderate refer to exteralised behaviour oly ad possibly missig some of the more impairig iteralised symptoms of ADHD. ADDISS The guidelie recommeds parets of pre school ad school childre are set o paretig courses ad the child o a group treatmet programme before medicatio is give. Meawhile the child s learig is compromised ad he/she is beig puished for its bad behaviour ad i some cases excluded from school. Thak you for your commets. These highlight issues aroud traiig for tier oe professioals. Sectio of the full guidelie highlights the role of secodary care services i traiig tier oe professioals. The GDG s recommedatio about cosideratio of the possibility of a paret traiig course are i keepig with techology appraisal o CD ad relate to situatios where there is associated ODD or CD (6.2.2 of the full guidelie). ted. Thak you. Thak you for this very helpful commet, which we have addressed by more explicit descriptios of criteria for severity i the guidelie, drawig from those i Chapter 5 of the full guidelie. There is isufficiet evidece for medicatio beig effective i pre-school childre ad we would be cocered about recommedig a treatmet that is associated with sigificat harm without clear evidece of there beig beefit, especially i this age group. For school childre with moderate impairmet we have 2

3 Status Orgaisatio ADDISS 9 Full ADDISS 10 Full ADDISS 11 Full Sectio Commets Resposes The guidelie also recommeds that oly childre with sigificat impairmet be medicated. If a less sigificat case presets where medicatio would be of beefit to the child, are they to be deied the support they eed? t all ADHD childre preset with a coduct problem so paret traiig would ot be appropriate i these circumstaces as a first port of call. Whilst it is agreed that teachers with some ADHD traiig put i place behavioural itervetios i their classroom settig, ot all class teachers have had the beefit of a traiig. It ought to be recommeded that all class teachers across the educatioal board be ADHD specific traied, so that ADHD childre ca beefit from the same behavioural strategies. Whilst a recommedatio is beig made for a 8-12 week paretig programme for parets of preschoolers it might be better to look at a shorter more effective programme for parets of older childre otherwise these childre may ed up waitig a log time for proper treatmet. Paretig programmes are geerally ot available although there are ow may volutary sector orgaisatios offerig ADHD specific programmes. Cliicias should seek these out quickly to avoid firstly a log wait for a programme, followed by a eve loger wait for medical treatmet. It might be appropriate to suggest parets try fish oils. Some parets have foud them to be beeficial. It must be remembered that parets are very fighteed to put their childre o medicatio. They also feel that if they do t accept medicatio, they will be discharged (this happes a lot) Parets recommeded iitial treatmet to be paret traiig ad a possible psychological itervetio for the child, as there is evidece for effectiveess usig this approach ad avoids the risk of harm associated with medicatio. If psychological/behavioural itervetios are ieffective, medicatio is a optio for school childre. I cosiderig which treatmet should be used, healthcare professioals must take ito accout ot oly the relative beefits/risks of differet treatmets but also the severity of the coditio to be treated. The more severe a coditio the more likely it is that healthcare professioals will accept greater treatmet risks. Although the details of how the guidelie is implemeted is ot icluded i the recommedatios, with respect to educatioal settigs, we will suggest that the DCSF ad the TDA work i cosultatio with relevat health service orgaisatios, to produce traiig programmes ad guidace for addressig childre with ADHD. Thak you. Ufortuately o effective radomised cotrolled trials were foud for sigificatly shorter programmes ad so we were uable to recommed this. There is a atioal iitiative to set up programmes for childre with coduct problems ad our expectatio is that these ca be made available to youg people with ADHD as well. We agree about the value of courses ad programmes ru by the volutary sector. The GDG is satisfied with the metioed recommedatio as it stads. We have foud evidece for the effectiveess of group parettraiig educatio programmes but have ot foud ay evidece o the efficacy of fish oils i people with ADHD. 3

4 Status Orgaisatio ADDISS 12 Full ADDISS 13 Full ADDISS 14 Full ADDISS 15 Full ADDISS 16 Full Sectio Commets Resposes should be offered the opportuity to explore other o pharmacological itervetios with the optio to come back to medicatio whe they feel more iclied to. How are we goig to implemet a comprehesive treatmet pla if cliics are uable to offer aythig other tha medicatio. Where will the fudig come from. Comorbid autistic spectrum disorder? If childre ad youg people with ADHD are uresposive to a maximum tolerated dose of methylpheidate ad atomoxetie the perhaps the cliicia should look to see what other comorbidity has bee missed As growth retardatio is oe of the least worryig side effects, paret should be give the optio to cotiue medicatio. Aecdotally childre o medicatio log term ted to catch up by their late tees. Paretig programmes ad behavioural programmes caot replace medicatio. It is our opiio that paretig programmes provide parets with tools to maage behaviour i the home that may ecourage harmoy i the home but they do ot improve childres ability to cocetrate i the classroom, remai o task, improve memory, complete work, become more orgaised with their thoughts ad thigs i school. The evidece for paret traiig is aroud preschoolers who do ot have to perform i the classroom. This why we feel With the emergece of all ew guidelies withi the health service there will be a gap betwee the services ad treatmets recommeded ad those actually available. provides costig tools for local authorities to support estimatig the local cost of implemetig guidace ad public health guidelies. These templates allow idividual NHS orgaisatios ad local health ecoomies to quickly assess the impact guidace will have o local budgets. There is o evidece that other drugs are superior to MPH for the treatmet of ADHD symptoms with co-morbid ASD. We agree ad icludes the recommedatio to re-evaluate diagosis ad comorbidity i the cotext of poor treatmet respose. Thak you. See sectio , we have rephrased this recommedatio as a optio to be cosidered i respose to growth retardatio. The youg perso ad their family will eed to weigh up the risks of stoppig medicatio for a short period agaist the beefits of accelerated growth. The RCT evidece show that paret traiig programmes ad psychological itervetios such as CBT ad social skills traiig sigificatly improve core ADHD symptoms ad this is true for older childre as idicated i the TA review. Paret traiig will ivolve 8-12 sessios which ca be achieved withi 8 weeks. If loger delays are i aticipated icludig waitig for sufficiet subject umbers, the idividual programmes could be offered as we have suggested. It is worth otig that eve with 4

5 Status Orgaisatio ADDISS 17 Full ADDISS 18 Full & ADDISS 19 Full & ADDISS 20 Full Adults with Attetio Deficit Disorder UK (AADD UK) Sectio Commets Resposes Geeral Geeral that childre cosidered to have moderate ADHD symptoms should ot have to wait weeks o ed for their parets to complete paretig courses. May teachers i secodary schools eed to chage their ow behaviour first. Their behaviours are ofte cofrotatioal ad aggressive towards childre with ADHD as well as usympathetic with a lack of uderstadig. This is a major factor i exacerbatig symptoms of ADHD i the secodary school classroom. We have to chage attitude ad this has to come from the top dow before it we start i the schools. It has to be a whole Local authority approach. This is achievable ad has already happeed i oe Lodo Borough with eormous success. The guidelie i geeral suggests that mild to moderate ADHD symptoms have little impact o the patiet. This is geerally ot the case. If a referral is depedet o the severity of the coditio, those with milder symptoms will ot be able to access medical itervetio. Fudig, i metal health ad educatio, plays ad importat role to be able to implemet all that is recommeded i the guidelie for it to succeed ad beefit ADHD childre ad adults. Geeral The guidelie is a positive step forward to supportig ADHD people. 1 Full This sectio as curretly writte is child cetric with oly a couple of passig refereces to adults. There is ot eough iformatio about key approaches to the assessmet process i adults. For example; uder the headig educatioal ad occupatioal adjustmet oly oe referece is made to uderstadig a adult s fuctioig i the workplace but there also eeds to be a uderstadig of why may adhd adults are uable to fuctio at all i a workplace ad i additio there eeds to be a uderstadig as to why may adults struggle with uiversity (ideed too medicatio; it will take at least 4 weeks before therapeutic effects may be observed. With paretig programmes, beeficial chages may occur after the first few sessios. ted. We agree that clearer specificatio of impact ad impairmet is desirable. Ideed, we iclude a research recommedatio i the area (which, for adults, was part of a key research priority). We have made more explicit the severity of impairmet. ted. Thak you. Thak you for highlightig this issue, which we agree is importat ad have give separate sectios to, e.g. i

6 Status Orgaisatio Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Sectio Commets Resposes may ed up droppig out of uiversity). Lack of space prevets us from givig other examples, suffice it to say adults eed to be give equal weight i this sectio 2 Full Uder psychological ad psychometric assessmet dyscalculia as a learig difficulty is missig. Dyscalculia is as much of a hidrace to those so afflicted as dyslexia. 3 Full 2.5 This sectio is titled Curret care ad treatmet of ADHD for childre i the NHS but you have slipped i a remark about adults uder as follows:...ad a geeral lack of support for adults with ADHD due to the difficulties associated with gettig a diagosis ad treatmet. We re ot suggestig you remove the commet from this sectio, but we would like you to add a setece like the followig: This issue will be discussed further i sectio 2.7 Adults with ADHD. 4 Full You metio that there are key differeces betwee treatmet strategies for childre ad those for adults. It would be helpful to list the key differeces. 5 Full Uder the sectio titled Educatioal ad occupatioal disadvatage you eed to iclude i additio to idividual or small group tuitio ad additioal time i examiatios the followig: examiatios i a separate room if ecessary, help with time maagemet, goal settig, task prioritisatio, ad study techiques. 6 Full 2.8 You say that childre with ADHD place a sigificat cost o health, social ad educatio services but you do t say how these costs compare to the costs associated with other disorders. I other words you eed to put the costs associated with both childre ad adults with ADHD i cotext. We have expaded other problems to clarify that dyscalculia ad NVLD are icluded. Thak you; this has bee ameded. These are discussed i the sectios below this setece i the text. Thak you we ow iclude the amedmets relatig to help with time maagemet, goal settig, task prioritisatio, ad study techiques. Systematic search o compariso of costs betwee ADHD ad other disorders was beyod the scope of this review. The objective of the review was to discuss the fiacial implicatios of ADHD. Where relevat evidece was available, the review did make comparisos betwee ADHD ad other coditios: Childre with ADHD have bee foud to icur similar healthcare costs to childre with asthma (Cha et al., 2002; Kelleher et al., 2001)... I the fial draft we also icluded a compariso of costs betwee adult 6

7 Status Orgaisatio Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Sectio Commets Resposes 7 Full 2.8 Agai, you talk about the icrease i cost of prescribed stimulats, but you do t put these costs i cotext. Have costs rise for drugs prescribed for other disorders ad illesses (diabetes, cardiac problems, etc.) due to icreased diagoses ad a shift towards more expesive formulatios. 8 Full 2.8 O lie 25 of this sectio you use the phrase the ecoomic burde of ADHD but the use of the word burde seems iflammatory, ad i fact we are disturbed by the fial setece i this sectio where you state that Efficiet use of healthcare resources is required... because without the cotext of the costs associated with treatig other disorders ad diseases, this whole sectio, the way it is curretly writte, could be see by some maagers as justificatio for limitig access to treatmet for ADHD. You eed to make it much clearer that leavig ADHD utreated will lead to much higher health costs as well as a greater fiacial ad psychological burde to society. 9 Full You say you coducted a literature review o health-related quality of life of childre with ADHD. You do ot say whether or ot you coducted a similar literature review for adults. If you did, you eed to say so. If you did ot, please say this, ad explai why. ADHD ad depressio / diabetes i the US (this was the oly published data available). We also reported aual prescriptio costs for atidepressats ad drugs for diabetes i Eglad to allow comparisos betwee these costs ad respective costs related to maagemet of ADHD. Systematic compariso of costs betwee ADHD ad other disorders was beyod the scope of this review. Nevertheless, i the fial text we have reported costs of drugs prescribed for diabetes ad depressio i Eglad, i order to put ADHD costs ito cotext. Systematic compariso of costs betwee ADHD ad other disorders was beyod the scope of this review, but we have made some amedmets i the text where possible (see also our other resposes o this issue). The word burde, where referrig to fiacial implicatios, has bee replaced i the fial draft by either the word cost or the word implicatio. Regardig the last setece: efficiet use of resources meas that maagemet of ADHD eeds to be efficiet, so as to maximise the health beefit for childre ad adults with ADHD, ad, at the same time, reduce the fiacial ad psychological burde to society. So this last setece does say that treatig ADHD reduces overall costs. We are ot sure why this sectio might be see as justificatio for limitig access to treatmet of ADHD. I ay case, we hope that from the recommedatios made it is clear that the purpose of the guidelie was ot such. The setece has bee ameded. Yes, a literature review o health-related quality of life of adults with ADHD was coducted ad the results have bee reported i (adults ecoomic model of CBT utility data ad estimatio of QALYs). We have ameded this sectio (3.6.1) to make this poit clear. 7

8 Sectio Commets Resposes Status Orgaisatio Adults with Attetio 10 Full 3.7 You say that capturig the voice of the service user Deficit Disorder UK is particularly pertiet where the service user is a (AADD UK) youg perso. You eed to explai this statemet, because as adults with ADHD, we re left woderig why it s ot as importat to capture our voices. Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) 11 Full Your focus group (14 boys ad two girls) is ubalaced. It s very importat that you hear the voices of girls (ad wome) with ADHD they have too ofte bee overlooked i the past. Also, why did you ot have a focus group for adults? 12 Full 4.1 Agai, we ask why you did ot iclude a focus group for adults? 13 Full The persoal stories are affectig, but you eed to iclude stories from those who suffer from the iattetive form of ADHD, ot just the hyperactive form. This sectio completely igores the sufferig of those who are trapped i a state of dreamy iertia. 14 Full The cocludig setece of this sectio does ot eve come close to expressig the gridig frustratio felt by itelliget adults who wat to cotribute to society, ad who wat to realise their ow potetial, but istead have to exped eergy maagig their symptoms whilst watchig less able peers overtake them fiacially ad socially. Please, either take out the chirpily cheerful suggestios about usig regular exercise as a aid for maagig symptoms, or else add a true ackowledgemet of our frustratios. As it is curretly writte, this last setece feels We have deleted the phrase ad substituted uderstad the experiece of ADHD from the service user s poit of view. The poit of the study was to uderstad youg peoples experiece of takig stimulat medicatio. Ideally the study would have cotiued to recruit childre ad youg people util there was a equivalet umber of girls ad boys. We would also have liked to coduct a focus group study for adults, but the time ad resources to carry out the study was limited, ad we prioritised for childre because, i a sese, childre have less volitio i decisio-makig whe prescribed drugs ad we wated to explore their views. We recogise the eed for more research o ADHD i adults, ad oe of our key research recommedatios is aimed at uderstadig whether o-pharmacological treatmets are more effective tha the use of drug treatmets. As we said earlier, time ad resources to carry out a study o adults was limited. Thak you for your commet. Ideally we would have liked to have icluded more persoal stories ad ecompass a wider rage of experiece, but as has bee oted these accouts are illustrative rather tha represetative of all types of experiece. Thak you, we have revised this sectio to take accout of your cocers. However, it should be oted that this sectio was writte by service users. 8

9 Status Orgaisatio Sectio Commets Resposes patroisig. Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) 15 Full The symptoms of ADHD do ot oly describe a child who is disruptive at home ad school. Some childre ad adults suffer from the predomiatly iattetive type. They are too easily overlooked ad this draft guidelie is fallig ito the same trap. 16 Full 4.5 This sectio does ot iclude all the issues that adults ad their parters face such as, for example, loeliess ad isolatio (ot all adults with adhd have satisfactory relatioships with parters ad frieds),. 17 Full We agree that adults with ADHD should be give writte iformatio about local ad atioal support groups, but support groups themselves could use help ad facilitators. There are oly a few that exist for adults ad most of those are ru by adults who have ADHD themselves. This creates a challegig situatio. 18 Full Social difficulties also affect those who have the predomiatly iattetive type of ADHD so you eed to iclude them i this sectio. They have oce agai bee overlooked. 19 Full 5.10 Has there bee ay research doe to see if a icrease i smokig amogst wome could explai a apparet icrease i the prevalece of ADHD, (if ideed there has actually bee a icrease i the prevalece rates of ADHD)? 20 Full 5.13 You state that the Cosesus coferece did ot cosider diagosis ad treatmet of adults with ADHD, but you do t explai why. Surely, it s equally importat to hear from experts about the importace of a iterdiscipliary approach to the diagosis ad treatmet of adults with ADHD? Thak you, we have added iattetiveess to this sectio. We agree. This part of the guidelie was itetioally maily o the experiece of childre with ADHD who costitute the mai focus of this guidelie. Moreover, may adults with ADHD will have graduated from childre services. The guidelie clearly could ot be comprehesive of adults with ADHD as the evidece is rather sparse. ted. The term ADHD that has bee used refers to all three of the ADHD subtypes icludig the iattetive subtype. The GDG agrees that people with the iattetive subtype will ofte have social problems. We did ot fid such research i our reviews. The quality of available data also does ot allow us to clarify the questio of whether the rate of ADHD has bee icreasig or ot although it is clear that treatmet prevalece has icreased. I a ideal world a guidelie would examie all possible assessmets, treatmets, alteratives, diagostic criteria, etc. I reality, the scope has to be limited to make the task maageable withi the resources we have. We agree with you that it would have bee iterestig ad importat to look at the diagosis i adults i the same detailed ad systematic way we have with 9

10 Status Orgaisatio Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK Sectio Commets Resposes 21 Full 5.13 You state the followig: There are expected to be may differet ways i which evirometal itervetios might be used to beefit people with ADHD ad reduce levels of impairmet. It would be helpful to add examples of evirometal itervetios. 22 Full 5.17 I this sectio you iclude Post-diagostic assessmet of childre ad youg people ad Post-diagostic advice for parets ad pre-school professioals but you do ot have a postdiagostic sectio for adults. We suggest that followig diagosis of adults, healthcare professioals ad other relevat professioals should udertake a comprehesive assessmet of comorbidities, ad the adult s social, familial, educatioal, ad/or work circumstaces ad physical health ad status prior to the commecemet of treatmet. 23 Full 6.1 This itroductory paragraph discusses childre but does ot metio adults at all. A glarig omissio give that sectio 6.4 addresses Services for adults with ADHD 24 Full 6.4 I cosiderig the care pathway eeds for adults with ADHD you list 3 categories of eed, but you are missig a 4 th category as follows: Curretly treated group: Diagosed ad treated for ADHD i adulthood ad still requirig treatmet. This category ca the be further sub-divided ito 3 sub-categories as i (1) Curretly treated group: diagosed ad treated for ADHD i childhood ad still requirig treatmet. 25 Full 6.4 We recommed that you make the followig services, i additio to those already listed i this childre. Nevertheless, it should be bore i mid that the evidece base for adults would have bee smaller tha the evidece base for childre with regard to validity. It is also worth metioig that the cotroversy over the diagosis i childre was a very high priority for the guidelie to deal with. We hope you ca uderstad this. We have deleted this setece due to lack of prove evirometal itervetios with a evidece base. We agree ad have made chages accordigly. The headig post-diagostic assessmet has bee removed. Thak you; we have ameded. Thak you we have added or adulthood to make clear that people could have bee diagosed ad treated as adults ad ot oly as childre ad the same treatmet issues arise. We ow iclude the followig setece: Advice ad support should be cosidered for the 10

11 Status Orgaisatio (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Sectio Commets Resposes sectio, available to adults with ADHD: access to scietific & research articles, advice ad support for workplace ad career issues, advice ad support for college & educatioal issues, advice ad support for family & relatioship issues, advice ad support for parters & relatives of adults with ADHD, advice about time maagemet & orgaisatio issues, advice ad support for wome s ad me s issues, ad fially advice ad support for support groups. 26 Full 6.7 I this sectio you ackowledge that lack of specialist adult ADHD kowledge i the UK, combied with a lack of service provisio for adults, is a major impedimet to implemetatio of these guidelies, but you do ot specifically address how these failigs will be corrected so that the guidelies ca be implemeted. It seems apparet that a formal traiig programme for healthcare professioals is eeded. 27 Full 6.7 Uder the list of developmetal disorders (Psychiatrists will eed to distiguish symptoms of ADHD from patters of cogitive fuctio) you have ot icluded dyscalculia. It eeds to be icluded because it is ofte ethylph with ADHD. 28 Full 29 Full You will also eed to liaise with the justice system to help those adults with ADHD who have ufortuately eded up i priso We ote that you recommed that specialist adhd teams for adults ad childre should joitly develop age-appropriate traiig programmes, but do t forget that adults have larger etworks ad come ito cotact with a wider rage of other professioals tha those listed i this sectio. Others such as huma resources professioals, uiversity staff, employers, priso workers, church workers, metal health charity workers, addictio cousellors, debt cousellors, declutterers, coaches may all come ito cotact with adults with ADHD. followig: workplace ad career issues, advice ad support for college ad educatioal issues, advice ad support for family ad relatioship issues, advice ad support for parters & relatives of adults with ADHD, advice about time maagemet ad orgaisatio issues, advice ad support for wome s ad me s issues, ad fially advice ad support for support groups. Thak you, but it is beyod the scope of the guidelie to specify how to carry out specific aspects of its implemetatio. There is evidece that the two do ot cosegregate i families ad are aetiologically distict the evidece for the associatio is o where ear as clear as that for specific readig problems for this reaso we have left this out of the list of associated problems. Thak you. Foresic services have bee added. We thak the reviewer for these commets. Traiig programs established by specialist teams ca be delivered to a wide rage of huma resources. We have broadeed the descriptio to iclude other professioals comig ito cotact with ADHD. 11

12 Status Orgaisatio Adults with Attetio 30 Full Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK Sectio Commets Resposes Sice patiets are lucky if they sped 10 miutes with a GP, we are ot sure how a GP is goig to be able to tell the differece betwee behavioural maifestatios that bega i early childhood ad might be related to ADHD from those that could be explaied by other psychiatric or persoality disorder diagoses. Sice GP s sped very little time with each patiet, we recommed that a traiig programme for all GP s be give top priority. 31 Full 7.1 There is o metio of adults at all i the first paragraph of this sectio. 32 Full 7.1 I the sub-sectio titled Narrow cliical beefits of medicatio you state that childre ad adults with adhd typically have secodary problems ot resolved with medicatio, but the oly examples you give relate to childre ot adults. We recommed you iclude a few adult examples. 33 Full 7.1 Uder Weak resposiveess of ADHD symptoms to medicatio oly childre are metioed; you eed to iclude adults with adhd i this sectio. 34 Full 7.1 Uder Ethical ad other objectios to medicatio the views of adults eed to be icluded. Some adults with adhd also have ethical cocers about the use of medicatio, ad also worry about the log term use of stimulats. 35 Full This sectio eeds aother paragraph that states the mai aim of all psychological itervetios for Thak you. Please see Recommedatio that refers to actios to be take i geeral practice. Thak you, the paragraph has bee ameded to metio adults. The itroductio to this chapter sets the scee for the iterest i the use of psychological itervetios for ADHD; it is iteded to be relatively brief ad does ot discuss the evidece that forms a basis for guidelie recommedatios. I ay evet, the text here outlies the reasos for the research iterest i psychological itervetios for ADHD ad as the research iterest has largely focused o childre the focus of the text is appropriate. The itroductio to this chapter sets the scee for the iterest i the use of psychological itervetios for ADHD; it is iteded to be relatively brief ad does ot discuss the evidece that forms a basis for guidelie recommedatios. I ay evet, the text here outlies the reasos for the research iterest i psychological itervetios for ADHD ad as the research iterest has largely focused o childre the focus of the text is appropriate. Thak you; we have ameded the text to iclude adults. Thak you. This sectio is part of the itroductio ad the first paragraph is relevat to both 12

13 Status Orgaisatio (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Sectio Commets Resposes ADHD i adults, curretly oly the mai aim for childre is discussed i this sectio. 36 Full Whilst you recommed CBT itervetios for adults with adhd, at the same time you say that the developmet of CBT for adults with adhd has lagged behid its developmet for childre. We recommed, therefore, that a ote be added recommedig that CBT for use with adults with adhd should be upgraded ad that this eeds to be give high priority. 37 Full We ote that this is a relatively legthy sectio o the cost effectiveess of CBT for adults with ADHD which is all based upo very sparse evidece ad cosequetly you state that further research is required. We are cocered that your statemet will provide NHS maagers with a coveiet excuse for ot providig this service. We, therefore, recommed, that you iclude a setece i this sectio (i additio to the recommedatios i 7.5) recommedig that CBT be provided for adults with ADHD. Please ote that researchers will ot be able to study the cost effectiveess of CBT for adults if adults are ot give access to the service i the first place. Agai, we would like to ote that a discussio of cost eeds to be placed i childre ad adults. A paragraph addressig the aims of psychological itervetios for adults with ADHD has ot bee added as evidece o such itervetios is very sparse ad it is therefore difficult to make a geeral statemet o the aims of such itervetios. Evidece o itervetios for adults is discussed i detail i the body of the chapter (see 7.3). The itroductio to this chapter sets the scee for the use of psychological itervetios for childre ad adults with ADHD; it does ot discuss the evidece that forms a basis of the guidelie recommedatios ad is iteded to be relatively brief. Recommedatios are ot icluded i the text of the chapter itroductios or the mai body of the chapters i the full guidelie ideed ay recommedatios there would be overlooked. Sectio of the chapter gives a overview of the evidece ad cosideratios relevat to recommedatios o psychological itervetios for adults with ADHD. The recommedatios listed at the ed of the chapter (see 7.5), ad i the guidelie, iclude recommedatios o CBT for adults derived from the available evidece. Thak you. Sectio gives a overview of the evidece ad cosideratios relevat to recommedatios o psychological itervetios for adults with ADHD. The recommedatios listed at the ed of the chapter (see 7.5) ad i the guidelie iclude recommedatios o CBT for adults derived from the available evidece. Please ote that recommedatios are ot icluded withi the body of the text of the full guidelie chapters ideed were they icluded there where they would be overlooked. Ecoomic evidece was based o all cliical evidece available (oe small RCT) which, evertheless, showed a sigificat effect for CBT. The aalysis showed that idividual CBT 13

14 Status Orgaisatio Adults with Attetio Deficit Disorder UK (AADD UK) Sectio Commets Resposes cotext. How much would the cost of treatig ADHD be relative to the cost of all the other services provided by the NHS? 38 Full Agai, you state that further research ito the cost effectiveess of group-based CBT is required. Agai, this eeds to be followed by a setece recommedig that this service be provided regardless. Quality of life caot be measured i terms of cost effectiveess. was ot cost-effective because the total itervetio cost was too high for the beefit provided, so that the icremetal costeffectiveess ratio was above the set costeffectiveess threshold. O the other had, we coducted a additioal aalysis which suggested that group CBT is likely to be costeffective if it has similar effectiveess to that of idividual CBT. The limitatios of the aalysis (icludig small study size) ad the eed for further research have bee discussed, ad CBT was recommeded for adults with ADHD. Research recommedatios do cosider opharmacological itervetios for adults. The fiacial impact of implemetig guidace is summarised i the atioal cost reports published by with publicatio of guidace. I additio, provides costig templates, which support local authorities estimate the local cost of implemetig guidace ad assess the impact guidace will have o local budgets. Compariso of costs of treatig ADHD with costs of all other services provided by the NHS was beyod the scope of the ecoomic aalysis. Nevertheless, this issue is discussed i chapter 2 (ecoomic cost of ADHD). Thak you. Sectio gives a overview of the evidece ad cosideratios relevat to recommedatios o psychological itervetios for adults with ADHD. The recommedatios listed at the ed of the chapter (see 7.5) iclude recommedatios o CBT for adults derived from the available evidece. Please ote that recommedatios are ot icluded withi the body of the text of the full guidelie chapters ideed were they icluded there where they would be overlooked. guidelies provide recommedatios usig criteria o both cliical ad cost-effectiveess. Provisio of cost-effective itervetios esures 14

15 Status Orgaisatio Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK Sectio Commets Resposes 39 Full Adults with ADHD are completely missig from this sectio. There are o examples at all from the adult world, ad yet adults with adhd ca beefit from evirometal maipulatio ad recreatioal itervetios at uiversity, at work, ad at home. optimal allocatio of healthcare resources. Costeffectiveess does take ito accout healthrelated quality of life. QALY is a measure of outcome widely used ad accepted i ecoomic evaluatio, which icorporates iformatio o quatity (legth of life) ad quality of life. Ay other issues o HRQoL that may ot be captured i the cost-effectiveess aalyses (e.g. future beefits ad risks) have bee take ito accout by the GDG members whe makig recommedatios. Thak you. Examples of the use of the itervetios discussed i this sectio with adults with ADHD were ot icluded as o evidece was idetified o such itervetios i adult populatios. 40 Full Agai, there is absolutely o metio of adults Thak you. Examples of the use of the itervetios discussed i this sectio with adults with ADHD were ot icluded as o evidece was idetified o such itervetios i adult populatios. 41 Full Adults with ADHD have bee forgotte agai, ad yet may adults also use yoga ad massage. 42 Full We recommed that you add a additioal setece alog the lies of CBT may be cosidered whe the idividual (regardless of whether or ot medicatio is effective) states that they eed help developig social skills etc. 43 Full 9 Adults with ADHD are ot metioed aywhere i this sectio ot eve i 9.4 uder recommedatios, ad yet some GP s are recommedig fish oil supplemets to adults with ADHD. 44 Full Geeral We foud that this draft guidelie is weighted towards childre ad youg people ad also Thak you, metio of the use of these techiques with adults has bee added. Thak you. This is covered by the two recommedatios o CBT for adults. The first recommeds CBT to address persistig fuctioal impairmets i adults o medicatio. The secod recommeds CBT to address residual fuctioal impairmets. Impairmets i social skills are covered by these recommedatios as they are a fuctioal impairmet. We did ot fid evidece to make differet recommedatios for adults about fish oil. Thak you; we have attempted to take o board your suggestios/commets where possible. 15

16 Status Orgaisatio (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK 45 Full 6.7 Sectio Commets Resposes Geeral towards the hyperactive sub-type of ADHD. Ufortuately, we oly formed our orgaisatio (Adults with Attetio Deficit UK) last year ad so were uable to provide isight at the begiig of this process. We strogly urge you, therefore, to heed our commets i this respose so that the biases may be corrected ad the guidelie thus ca become more relevat as well as balaced. Sice there is a tedecy i the draft guidelies to favour childre s ad parets issues we felt you could probably beefit from a listig of the services that adults with ADHD eed from a adult ADHD cliic (the ADHD cliic could coordiate services with other agecies to deliver some of these): 1. Medical maagemet 2. Psychological treatmet 3. Access to the latest scietific & research iformatio 4. Help with workplace ad career issues 5. Help with college & educatioal issues 6. Help with life skills 7. Help with family & relatioship issues 8. Help & support for o ADHD parters & relatives 9. Help with time maagemet & orgaisatioal issues 10. Help with wome s ad me s issues 11. Coachig 12. Help with ager maagemet 13. Help with addictio issues 14. Help with fiacial ad debt related issues 15. Support ad advice for adult ADHD support groups (may are ru by adults who have ADHD themselves) 16. Help with sleep disorders (e.g. Restless Leg Sydrome, etc.) because the prevalece rates are higher i the ADHD populatio, ad a deficit of restful sleep ca exacerbate ADHD symptoms. 46 Geeral This guidace seems limited i its advice to medical staff as to how to diagose ad treat Adult Thak you very much; guidelies ca t possibly cover all services, or ideed the help that might be required by people withi those services. Nevertheless, we have made a additioal recommedatio which is ow a key priority that we should ot be simply providig drug treatmets for adults with ADHD; we should be providig this as apart of a comprehesive service. Clearly, this should iclude the sorts of issues you raise. This suggestio deserves further exploratio; but the treatmet of related disorders such as axiety 16

17 Status Orgaisatio (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Sectio Commets Resposes adhd. Give that this guidace is recommedig a differet way of assessig metal health difficulties i adulthood, it eeds to emphasise the fact that a lot of the co-morbid coditios related to adhd, such as axiety, depressio, paic attacks etc ca be related to utreated adhd i childhood. Therefore whe treatig these coditios, care should be take to esure there is ot a core cause such as adhd which eeds to be treated. It also eeds to be emphasised that because of the arrow descriptio of adhd as represeted i ICD 10 (which is commoly applied i the UK) as opposed to DSM-IV, may childre will ot have had their difficulties recogised. Therefore it should come as o surprise that adults will preset i Metal Health services with symptoms of adult adhd without ecessarily havig the childhood symptoms of adhd as represeted by ICD-10. However their eed for properly resourced services is extremely importat. Whe it comes to childre, ad rightly so, emphasis is give to the eed to cosider a rage of situatios where adhd may sigificatly affect their fuctioig. Throughout the guidace there is very little of this cosideratio beig give to adults Talks about all people with adhd ad their Carers This should iclude (spouse parters or fried) ad be spelt out. It does so uder , i relatio to the titratio of meds ad i where it is talkig about duratio, discotiuatio ad cotiuity of treatmet It is equally importat to try ad iclude these people i the assessmet process. 49 Full 50 Full relates oly to childre but should iclude adults Should be a key priority especially as there are so few adult cliics. is outside the remit of this guidelie. We agree with the importace of recogisig symptoms i adult life, ad of goig beyod the arrower ICD- 10 defiitio, ad believe this is reflected throughout the guidelies. Thak you. However, this is a itroductory sectio that maily poits out that people with ADHD ad their parets or carers may experiece stigma. Thak you, but this caot be aswered i the way that it is formatted. We agree that this item is importat. However, is a itroductory paragraph ad so it would ot be a key recommedatio, ad ufortuately we ca oly make 10 key priorities. 17

18 Status Orgaisatio Adults with Attetio 51 Full Deficit Disorder UK (AADD UK) Adults with Attetio 52 Full Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) 53 Full 54 Full Sectio Commets Resposes Should be a key priority especially as there are so few adult cliics. Agai i the absece of specialist adult cliics someoe has to take resposibility to make sure this happes. A suggestio is that Metal health Trust s must esure that someoe at a seior level is give resposibility for esurig this happes. Without this kid of caveat, it is likely adult services will be very slow to develop ad respod to adults with adhd. It should ot be left to Adult psychiatrist s to esure they udergo traiig Trusts should be give the resposibility of esurig Adult psychiatrists receive adequate traiig with regards to adhd. Without appropriate traiig GP s ad Geeral psychiatrist s are ulikely to recogise the symptoms. There is also a assumptio that there is a expert i adhd to whom they ca refer, ad this is ot always the case All of these sectios relate to post diagostic assessmet ad advice for childre. However whe it comes to adults i 1.7 there is o metio of comprehesive assessmet for co-morbidities ad very little advice. Other tha medicatio the oly other suggestio is to offer CBT. This seems to rule out the appropriateess of other kids of itervetios which might help overcome orgaisatioal/ educatioal difficulties, relatioship problems etc. This might be time maagemet skills, appropriate support through Uiversity such as metorig ad other strategies which might help the perso overcome day to day difficulties; most of these difficulties, ot posig a problem for someoe without adhd All of these sectios relate to post diagostic assessmet ad advice for childre. However whe it comes to adults i 1.7 there is o metio of comprehesive assessmet for co-morbidities We agree that this item is importat. Ufortuately we ca oly make 10 key priorities. We have ow made it clear i the recommedatio that there should be separate teams/cliics for adults. We agree that traiig should be a requiremet for all adult psychiatrists ad altered the phrasig i the precedig recommedatio to idicate trust resposibility for settig up traiig programs. We agree expert teams ad traiig both eed to be established as recommeded i the guidelies. We have ameded the sectio ad have take ito accout your commet. We have ameded the sectio ad have take ito accout your commet. 18

19 Status Orgaisatio Adults with Attetio Deficit Disorder UK (AADD UK) Adults with Attetio Deficit Disorder UK (AADD UK) British Associatio for Psychopharmacology Sectio Commets Resposes ad very little advice. Other tha medicatio the oly other suggestio is to offer CBT. This seems to rule out the appropriateess of other kids of itervetios which might help overcome orgaisatioal/ educatioal difficulties, relatioship problems etc. This might be time maagemet skills, appropriate support through Uiversity such as metorig ad other strategies which might help the perso overcome day to day difficulties; most of these difficulties, ot posig a problem for someoe without adhd AND AGAIN: All of these sectios relate to post diagostic assessmet ad advice for childre. However whe it comes to adults i 1.7 there is o metio of comprehesive assessmet for comorbidities ad very little advice. Other tha medicatio the oly other suggestio is to offer CBT. This seems to rule out the appropriateess of other kids of itervetios which might help overcome orgaisatioal/ educatioal difficulties, relatioship problems etc. This might be time maagemet skills, appropriate support through Uiversity such as metorig ad other strategies which might help the perso overcome day to day difficulties; most of these difficulties, ot posig a problem for someoe without adhd. 58 Full Commuicatio betwee prescriber ad child should be improved by educatig parets/carers ad esure there are three way coversatio. May adults with adhd have difficulty self reportig, so wherever possible ad with the adults permissio, parters, spouses ad frieds should be brought ito the coversatio 1 Geeral The guidelie highlights throughout the documet the urget eed for developig ad improvig ADHD services, ot oly for childre ad youg people, but for adults, too. Adult ADHD has bee a area which has bee uder-researched ad uder-fuded for may years. The BAP therefore welcomes this guidelie s attempts to improve the The potetial value of psychological itervetios for ADHD i adults has ot yet bee sufficietly addressed by research, ad this is oe of our key research recommedatios. The GDG agree with the importace of icludig discussio with sigificat others i the assessmet process for both childre ad adults. Thak you. 19

20 Status Orgaisatio British Associatio for Psychopharmacology British Associatio for Psychopharmacology British Associatio for Psychopharmacology British Associatio for Psychopharmacology British Associatio for Psychopharmacology British Associatio for Psychopharmacology Itro 3 Itroductio Para 3 Sectio Commets Resposes situatio of adult patiets sufferig from ADHD by improvig the quality of services as well as service availability ad access.. While comorbid coditios are metioed, it would be worthwhile to cosider to also list typical differetial diagoses of ADHD The documet gives a prevalece of adult ADHD of about 2% (page 5). There is evidece, that this umber might be higher. Fayyad et al. (2007) estimate a worldwide average prevalece of 3.4% (Brit J Psychiatry 190: ). 4 Geeral The BAP welcomes that the guidelie focus o idividualised care, tailored to the perso s eed istead of propagatig a oe-fits-all approach. 5 Persocetred care Full 7 Full KPI The guidelie uderscores the importace of a practical ad fuctioig trasitio betwee child ad adolescet psychiatric services ad adult services. I cliical practice, there is ofte room for improvemet regardig this trasitio, specifically because may adult psychiatric services are still ot sufficietly equipped to maage adult patiets with ADHD. The BAP agrees that there is a urget eed of improved trasitio betwee services ad supports the call for a better itegratio of differet health services (i.e. paediatric, child ad adolescet metal health, adult metal health). The BAP supports the idea of creatig specialist ADHD teams for diagosis, treatmet ad traiig purposes. Several statemets about a child or youg perso with ADHD are true for adults as well. Therefore the term adult patiets might be added to the sectios umbers metioed i the previous colum. We do ot thik this would be appropriate i the guidelie, which is the list of the recommedatios of the guidelie. Prevalece rates remai ucertai sice persistece of ADHD ito adulthood is aroud 15% (Faraoe et al., 2006) - a childhood prevalece of 22.6% would therefore be required! The GDG suggest that prevalece studies of ADHD such as the oe cited have used broader defiitios of the disorder to the oe cosidered applicable by the GDG by ot takig impairmet properly ito accout. This is discussed i detail i the full guidelies. We ow clarify this poit i the text of the guidelie. Thak you. ted. ted. We have very carefully ad isured that where we ca make collective recommedatios applyig to childre, youg people ad adults we have ow doe so. Although i some places we have had to duplicate some recommedatios for 20