認(rèn)知障礙簡(jiǎn)明評(píng)價(jià)量表在行為異常型額顳葉癡呆及阿爾茨海默病病人照料者負(fù)擔(dān)評(píng)估中的應(yīng)用

湯群英徐俊顧小花胡月洪音李琳陶帶花成佳星

目的探討認(rèn)知障礙簡(jiǎn)明評(píng)價(jià)量表(Cog-12)在評(píng)估行為異常型額顳葉癡呆(bvFTD)及阿爾茨海默病(AD)病人照料者負(fù)擔(dān)中的應(yīng)用價(jià)值。方法研究對(duì)象取自2007年1月至2015年11月來自中國(guó)阿爾茨海默病與相關(guān)疾病研究協(xié)作組(CARDS)研究課題登記的基線調(diào)查部分的對(duì)象,共計(jì)入組了臨床癡呆量表(CDR)評(píng)分為1～2分的206例癡呆病人(AD組120例,bvFTD組86例)。所有病人均完成Cog-12量表、Addenbrooke改良認(rèn)知評(píng)估量表(ACE-R)、額葉行為量表(FBI)的測(cè)評(píng),所有照料者均完成照料者負(fù)擔(dān)問卷(caregiver burden inventory,CBI)、神經(jīng)精神問卷(NPI)、焦慮自評(píng)量表(SAS)、抑郁自評(píng)量表(SDS)的測(cè)評(píng)。結(jié)果(1)bvFTD組病人ACE-R,FBI,Cog-12,NPI評(píng)分均高于AD組。bvFTD組照料者CBI,SAS,SDS評(píng)分均高于AD組,其中,bvFTD組時(shí)間依賴負(fù)擔(dān)及情感負(fù)擔(dān)較AD組重,2組發(fā)展受限評(píng)分、身體負(fù)擔(dān)評(píng)分及社交負(fù)擔(dān)評(píng)分差異無統(tǒng)計(jì)學(xué)意義;(2)bvFTD組CBI與Cog-12,NPI,FBI均呈顯著正相關(guān),AD組CBI與Cog-12,NPI呈顯著正相關(guān);2組SAS、SDS 與CBI呈顯著正相關(guān);(3)bvFTD組照料者負(fù)擔(dān)主要來源于病人的神經(jīng)精神及行為癥狀,而AD組照料者負(fù)擔(dān)主要來源于神經(jīng)精神癥狀。結(jié)論bvFTD照料者負(fù)擔(dān)較AD照料者負(fù)擔(dān)更重,出現(xiàn)抑郁、焦慮風(fēng)險(xiǎn)更高。bvFTD照料者負(fù)擔(dān)重與病人神經(jīng)精神癥狀及行為紊亂密切相關(guān),AD照料者負(fù)擔(dān)主要與神經(jīng)精神癥狀相關(guān),Cog-12可推廣作為間接評(píng)估癡呆病人照料者負(fù)擔(dān)的工具。專業(yè)照料指導(dǎo)、心理支持等減輕照料者負(fù)擔(dān)措施迫在眉睫。

行為異常型額顳葉癡呆; 阿爾茨海默病; 照料者負(fù)擔(dān); 認(rèn)知障礙簡(jiǎn)明評(píng)價(jià)量表

隨著人口老齡化,癡呆人數(shù)迅速增加,目前已成為各國(guó)面臨的主要公共衛(wèi)生難題。目前我國(guó)大陸老年期癡呆人群高達(dá)900萬[1],阿爾茨海默病(Alzheimer’ s disease, AD)是導(dǎo)致老年期認(rèn)知障礙最常見病因,而額顳葉癡呆(frontotemporal lobar dementia, FTD)是第二大常見癡呆類型[2]。行為異常型額顳葉癡呆(behavioral variant of frontotemporal dementia, bvFTD)是其中最常見的亞型。目前,我國(guó)尚缺乏完善的癡呆病人照料管理措施,癡呆病人給照料者帶來沉重的身心負(fù)擔(dān),因2種癡呆具有不同的病理類型及受累部位,導(dǎo)致了不同的臨床表現(xiàn),可能給照料者帶來不同程度及類型的負(fù)擔(dān)。近年來一系列研究評(píng)估了AD及FTD的照料者負(fù)擔(dān)[3-8],但研究結(jié)果尚有爭(zhēng)議,且目前國(guó)內(nèi)尚缺乏AD及bvFTD照料者負(fù)擔(dān)的比較研究,本研究擬探討認(rèn)知障礙簡(jiǎn)明評(píng)價(jià)量表(brief cognitive impairment rating scale, Cog-12)在評(píng)估AD及bvFTD照料者負(fù)擔(dān)中的應(yīng)用價(jià)值。

1 對(duì)象和方法

1.1 研究對(duì)象 選取2007年1月至2015年11月來自中國(guó)阿爾茨海默病與相關(guān)疾病研究協(xié)作組(CARDS)研究課題登記的研究對(duì)象。共納入206例,其中bvFTD組86例,男39例,女47例,發(fā)病年齡44～80歲,平均(60.7±7.3)歲;AD組120例,男47例,女73例,發(fā)病年齡55～88歲,平均(69.0±7.3)歲。bvFTD病人入組標(biāo)準(zhǔn):(1)根據(jù)國(guó)際行為變異型額顳葉癡呆標(biāo)準(zhǔn)聯(lián)盟(International Behavioural Variant FTD Criteria Consortium,FTDC)2011新版 bvFTD診斷標(biāo)準(zhǔn)[9],診斷為“很可能bvFTD”;(2)臨床癡呆量表(clinical dementia rating, CDR)[10]評(píng)分為1～2分。AD病人入組標(biāo)準(zhǔn):(1)符合美國(guó)國(guó)立神經(jīng)病、語言交流障礙和卒中研究所-老年性癡呆及相關(guān)疾病學(xué)會(huì)(NINCDS/ADRDA)的“很可能AD”標(biāo)準(zhǔn)診斷[11];(2)CDR評(píng)分為1～2分。排除標(biāo)準(zhǔn):(1)不符合bvFTD或AD診斷標(biāo)準(zhǔn);(2)合并嚴(yán)重焦慮、抑郁癥或嚴(yán)重精神癥狀;(3)合并可導(dǎo)致失去生活自理能力的其他嚴(yán)重疾病。最終由長(zhǎng)期從事認(rèn)知功能障礙?？频尼t(yī)生做出診斷。

照料者入組標(biāo)準(zhǔn):(1)照料者對(duì)病人病情比較了解,是病人主要照料人,每天照料病人6 h以上;(2)照料者依從性好,同意并配合此項(xiàng)研究,并簽署知情同意書。照料者排除標(biāo)準(zhǔn):合并語言或聽力障礙,無法完成量表評(píng)估者。

本研究符合醫(yī)學(xué)倫理學(xué)標(biāo)準(zhǔn),通過了江蘇省蘇北人民醫(yī)院醫(yī)學(xué)倫理委員會(huì)的審核 (批準(zhǔn)號(hào):SBYY2015003)。

1.2 方法

1.2.1 一般資料收集:收集所有入組病人性別、年齡、教育程度等人口學(xué)特征,照料者與病人關(guān)系,照料年限,工作類型,家庭收入情況等一般資料。

1.2.2 神經(jīng)心理學(xué)評(píng)估:所有資料收集均由接受過培訓(xùn)的專科醫(yī)師或調(diào)查員完成問卷評(píng)估及填寫。

1.2.2.1 問卷調(diào)查:所有病人完成CDR,Addenbrooke改良認(rèn)知評(píng)估量表(Addenbrooke’s Cognitive Examination-revised, ACE-R),Cog-12,額葉行為量表(frontal behavior inventory, FBI),神經(jīng)精神問卷(NPI)評(píng)估。CDR是醫(yī)生通過六項(xiàng)功能(記憶力,定向力,判斷和解決問題的能力,社會(huì)事物,家庭生活業(yè)余愛好,個(gè)人照料)的每個(gè)方面分別作出從無損害到重度損害五級(jí)評(píng)估,但每項(xiàng)功能的得分不疊加,而是根據(jù)總的評(píng)分標(biāo)準(zhǔn)將六項(xiàng)能力的評(píng)定綜合成一個(gè)總分,其結(jié)果以0,0.5,1,2,3分表示。ACE-R是包括簡(jiǎn)易精神狀態(tài)量表(mini-mental state examination,MMSE) 在內(nèi)的神經(jīng)心理測(cè)評(píng)量表,ACE-R中包涵MMSE各項(xiàng)得分[12]。Cog-12是由知情者完成的,反映癡呆病人常見認(rèn)知損害的客觀量表,共12個(gè)條目。FBI是通過照料者角度評(píng)估bvFTD病人行為紊亂癥狀的量表[13],包含24個(gè)測(cè)評(píng)項(xiàng)目,根據(jù)癥狀嚴(yán)重程度分為0～3分。NPI主要用于評(píng)估病人的神經(jīng)精神癥狀,包含12個(gè)測(cè)評(píng)項(xiàng)目,根據(jù)癥狀嚴(yán)重程度分為1～3分,根據(jù)癥狀的出現(xiàn)頻率分為1～4分,根據(jù)各癥狀的頻率×嚴(yán)重程度總和計(jì)算總分[14]。

1.2.2.2 所有照料者完成照料者負(fù)擔(dān)問卷(caregiver burden inventory, CBI)、焦慮自評(píng)量表(SAS)及抑郁自評(píng)量表(SDS):CBI是由Novak和Guest編制,主要用于測(cè)量照料者的照料負(fù)擔(dān),包含24個(gè)測(cè)評(píng)項(xiàng)目,根據(jù)負(fù)擔(dān)嚴(yán)重程度分為0～4分,包括5個(gè)負(fù)擔(dān)分類:時(shí)間依賴負(fù)擔(dān),發(fā)展受限負(fù)擔(dān),身體負(fù)擔(dān),社交負(fù)擔(dān),情感負(fù)擔(dān)[15]。SAS、SDS用于評(píng)估照料者的焦慮、抑郁癥狀,SAS標(biāo)準(zhǔn)分:總粗分×1.25后取整,焦慮分界值為50分;SDS標(biāo)準(zhǔn)分:總粗分×1. 25 后取整,其中抑郁分界值為53分。

1.3 統(tǒng)計(jì)學(xué)方法 采用EpiData 3.1軟件建立數(shù)據(jù)庫(kù)并進(jìn)行雙錄入核查。采用SPSS 13.0統(tǒng)計(jì)軟件進(jìn)行分析,符合正態(tài)分布的計(jì)量資料用均數(shù)±標(biāo)準(zhǔn)差表示,2組間比較采用兩獨(dú)立樣本t檢驗(yàn),率或構(gòu)成比比較采用χ2檢驗(yàn),用Person相關(guān)分析評(píng)估量表之間相關(guān)性;用多重線性回歸分析各影響因素對(duì)照料者負(fù)擔(dān)的影響。P<0.05為差異有統(tǒng)計(jì)學(xué)意義。

2 結(jié)果

2.1 一般資料 bvFTD組及AD組之間性別、教育程度、照料者分布、家庭收入情況、照料者照料年限及CDR評(píng)分差異均無統(tǒng)計(jì)學(xué)意義,而bvFTD組發(fā)病年齡顯著早于AD。見表1。

表1 bvFTD組與AD組一般資料比較

2.2 bvFTD組與AD組病人神經(jīng)心理量表評(píng)估及照料者負(fù)擔(dān)評(píng)估結(jié)果 bvFTD組ACE-R、FBI、Cog12、NPI評(píng)分均高于AD組,差異有統(tǒng)計(jì)學(xué)意義。bvFTD組照料者CBI、SAS、SDS評(píng)分均高于AD組,其中,bvFTD組時(shí)間依賴負(fù)擔(dān)及情感負(fù)擔(dān)顯著較AD組重。bvFTD組與AD組NPI評(píng)分比較結(jié)果顯示，bvFTD組淡漠、脫抑制和異常行為癥狀評(píng)分顯著高于AD組,AD組幻覺、妄想癥狀評(píng)分顯著高于bvFTD組,而使bvFTD照料者苦惱的主要癥狀為激越、攻擊性,異常運(yùn)動(dòng)行為及睡眠障礙,AD照料者苦惱的主要癥狀為睡眠障礙、幻覺。見表2。

項(xiàng)目bvFTD組(n=86)AD組(n=120)tP病人神經(jīng)心理量表評(píng)估 MMSE17.1±4.316.3±4.9-1.2130.227 ACE-R61.3±10.053.3±14.2-4.777<0.001 Cog-1221.9±6.016.5±6.5-6.125<0.001 FBI30.0±4.620.2±8.3-10.812<0.001NPI34.7±19.328.6±19.4-2.2410.025照料者負(fù)擔(dān)評(píng)估 CBI總分42.8±8.035.1±9.5-6.260<0.001 時(shí)間依賴負(fù)擔(dān)14.6±4.410.2±6.1-6.078<0.001 發(fā)展受限負(fù)擔(dān)8.4±3.98.0±4.4-0.6410.522 身體負(fù)擔(dān)9.1±4.18.4±4.4-1.1460.253 社交負(fù)擔(dān)5.5±2.85.4±2.7-0.4410.660 情感負(fù)擔(dān)5.2±3.43.2±1.8-4.872<0.001SAS38.6±9.334.4±9.1-3.1750.002SDS51.1±11.540.8±11.9-6.285<0.001

2.3 照料者負(fù)擔(dān)影響因素的多重線性回歸分析 AD組CBI評(píng)分與Cog-12,NPI呈顯著正相關(guān),Pearson相關(guān)系數(shù)(r)分別為0.879,0.848(P<0.001),CBI與FBI、ACE-R未見顯著相關(guān)性。bvFTD組CBI評(píng)分與Cog-12,NPI,FBI均呈顯著正相關(guān),r分別為0.679,0.694,0.668(P<0.001),CBI與ACE-R未見顯著相關(guān)性。所有對(duì)象SAS、SDS 與CBI評(píng)分均呈顯著正相關(guān),r分別為0.539,0.661(P<0.001)。分別對(duì)2組照料者負(fù)擔(dān)相關(guān)影響因素進(jìn)行多重線性回歸分析,以CBI為因變量,以性別、年齡教育程度、照料者分布、家庭收入情況、照料者照料年限,CDR評(píng)分及所有神經(jīng)心理學(xué)量表指標(biāo)為自變量,進(jìn)行多因素線性回歸分析,結(jié)果顯示,FBI、NPI對(duì)bvFTD組照料者負(fù)擔(dān)影響大,這2個(gè)因素可解釋照料者負(fù)擔(dān)變化的67.5%;NPI評(píng)分、Cog-12對(duì)AD組照料者負(fù)擔(dān)影響大,這2個(gè)因素可解釋照料者負(fù)擔(dān)變化的80.7%,見表3。

表3 影響2組照料者負(fù)擔(dān)相關(guān)因素的多重線性回歸分析

3 討論

既往研究比較了bvFTD及AD的照料者負(fù)擔(dān),本研究與大多數(shù)研究結(jié)果一致[6, 8],bvFTD照料者承受負(fù)擔(dān)更重。我們采用了CBI量表評(píng)估照料者負(fù)擔(dān),CBI量表將照料者負(fù)擔(dān)分為5個(gè)維度,bvFTD組照料負(fù)擔(dān)主要體現(xiàn)在時(shí)間依賴負(fù)擔(dān)及情感負(fù)擔(dān)上。時(shí)間依賴負(fù)擔(dān)主要取決于病人的日常生活能力,同等癡呆嚴(yán)重程度下,bvFTD病人常伴有更嚴(yán)重的行為紊亂及精神行為異常,導(dǎo)致其日常生活能力低下,個(gè)人自理能力顯著下降,對(duì)照料者嚴(yán)重依賴,照料者需付出更多時(shí)間及精力看護(hù)病人[8]。本研究中,bvFTD組情感負(fù)擔(dān)較AD組重,與國(guó)外相關(guān)研究結(jié)果不一致[8],考慮可能與中外不同的文化背景相關(guān),部分bvFTD照料者對(duì)病人異常行為感到尷尬、羞恥,甚至導(dǎo)致病人定期門診隨訪依從性下降。

與AD組相比,bvFTD組淡漠、脫抑制和異常行為癥狀更多見,與既往研究一致[9],但值得注意的是,顯著增加照料者負(fù)擔(dān)、使照料者苦惱的主要癥狀為激越、攻擊性,異常運(yùn)動(dòng)行為及睡眠障礙。攻擊性及異常行為顯著增加照料者負(fù)擔(dān)[16-17],有時(shí)甚至導(dǎo)致病人及照料者意外傷害,照料者需付出更多時(shí)間看護(hù),此外,異常行為顯著增加了照料者情感負(fù)擔(dān),可能導(dǎo)致照料者減少病人日常外出活動(dòng)。淡漠癥狀在bvFTD組中較常見,Dauphinot等[18]認(rèn)為淡漠通常伴隨著抑郁癥狀,病人常需要更多幫助來維持日常活動(dòng)能力,從而可能增加照料者負(fù)擔(dān)。但本研究未發(fā)現(xiàn)其與照料者負(fù)擔(dān)有顯著相關(guān),可能因本研究中照料者主要為病人家屬,未接受專業(yè)的照料培訓(xùn),未將固定時(shí)間及強(qiáng)度的日常活動(dòng)作為照料目標(biāo)之一,部分照料者甚至認(rèn)為,與有激越癥狀相比,淡漠癥狀顯著降低了照料負(fù)擔(dān)。

幻覺、妄想癥狀在本研究bvFTD組中相對(duì)少見,而在AD組較多,尤其以視幻覺多見,被害妄想可導(dǎo)致病人做出異常行為,增加照料者負(fù)擔(dān)[19]。本研究未發(fā)現(xiàn)病人教育程度、家庭收入情況、照料者關(guān)系及照料年限與照料者負(fù)擔(dān)之間有顯著相關(guān)性,可能與本研究系單中心研究有關(guān),尚需多中心、大樣本研究進(jìn)一步驗(yàn)證。

本研究中SAS、SDS 與CBI呈顯著正相關(guān),提示照料者負(fù)擔(dān)越重,并發(fā)抑郁、焦慮可能性越大,程度越重。沉重的照料負(fù)擔(dān)不僅可導(dǎo)致照料者情緒障礙,還可導(dǎo)致一系列器質(zhì)性疾病[20],早期心理干預(yù)、針對(duì)性的照料輔導(dǎo)有助于減輕負(fù)擔(dān)。

本研究還發(fā)現(xiàn),bvFTD組CBI與Cog-12、NPI、FBI均呈顯著正相關(guān),與ACE-R未見顯著相關(guān)性,而AD組CBI與Cog-12、NPI呈顯著正相關(guān),與FBI、ACE-R未見顯著相關(guān)性。且線性回歸分析也表明ACE-R對(duì)2組照料者負(fù)擔(dān)均無顯著影響,進(jìn)一步表明精神、行為紊亂是影響bvFTD照料者負(fù)擔(dān)最重要的因素之一,神經(jīng)、精神癥狀是影響AD照料者負(fù)擔(dān)最重要因素[5, 21]。

綜上所述,bvFTD組照料者較AD組照料者承受更大的負(fù)擔(dān)及照料壓力。 bvFTD組照料者負(fù)擔(dān)重與病人神經(jīng)精神癥狀及行為紊亂密切相關(guān),AD組照料者負(fù)擔(dān)主要與神經(jīng)精神癥狀相關(guān),NPI、Cog-12可作為間接評(píng)估照料者負(fù)擔(dān)的工具,而與NPI相比,Cog-12耗時(shí)短,步驟簡(jiǎn)潔,可推廣用于評(píng)估癡呆病人的照料者負(fù)擔(dān)。

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ApplicationofbriefcognitiveimpairmentratingscaleinevaluatingcaregiverburdenofpatientswithbehavioralvariantoffrontotemporaldementiaorAlzheimer’sdisease

TANGQun-ying.

DepartmentofNeurology,JingjiangPeople’sHospital,Taizhou214500,China;XUJun,HUYue,LILin,TAODai-hua,CHENGJia-xing.DepartmentofNeurology;GUXiao-hua.DepartmentofIntensiveCareUnit;HONGYin.HealthManagementCenter,NorthernJiangsuPeople’sHospital,Yangzhou225001,China

ObjectiveTo explore the value of brief cognitive impairment rating scale(Cog-12)in evaluating caregiver burden of patients with behavioral variant of frontotemporal dementia (bvFTD) or Alzheimer’s disease (AD).MethodsThe study was part of China Alzheimer’s Disease and Related Diseases Study, caregivers and patients diagnosed with AD (n=120) or bvFTD (n=86) between January 2007 to November 2015 were selected. The scores of clinical dementia rating (CDR) of all patients were 1 or 2. The Cog-12, Addenbrooke’s cognitive examination-revised (ACE-R), and frontal behavioral inventory (FBI) were applied for evaluating cognitive and behavior performances in all patients. And caregiver burden inventory (CBI), neuropsychiatric inventory (NPI), self-rating anxiety scale(SAS), and self-rating depression scale(SDS) were applied for caregivers of all patients.Results(1) The scores of ACE-R, FBI, Cog12 and NPI in bvFTD group were significantly higher than those in AD group; And the scores of CBI, SAS and SDS in caregivers of bvFTD group were significantly higher than those in AD group. Moreover, the time-dependent burden and emotional burden of caregivers of bvFTD group were remarkably heavier than caregivers of AD group, while there were no significant differences in developmental burden, physical burden and social burden between two groups. (2) The scores of Cog-12, NPI and FBI showed a significant correlation with CBI in bvFTD group, while the scores of Cog-12, NPI showed a significant correlation with CBI in AD group. The scores of SAS or SDS and CBI correlated significantly. (3) The caregiver burden of bvFTD group was mainly due to on neuropsychiatric symptoms and behavior disorder, while the caregiver burden of AD group mainly resulted from neuropsychiatric symptoms.ConclusionsThe caregiver burden of patients with bvFTD are remarkably heavier than patients with AD, so the caregivers of bvFTD patients are vulnerable to depression or anxiety. The caregiver burden of patients with bvFTD is associated with neuropsychiatric symptoms and behavior disorder, while the caregiver burden of patients with bvFTD is associated with neuropsychiatric symptoms. Cog-12 is a reliable assessment tool suitable to assess caregiver burden indirectly. Professional health-care guidance, psychological support and other appropriate interventions should be planned. Only in this way can interventions that aim to reduce the caregiver burden be undertaken.

behavioral variant of frontotemporal dementia; Alzheimer’s disease; caregiver burden; brief cognitive impairment rating scale

國(guó)家自然科學(xué)基金(81471215,81271211)；江蘇省社會(huì)發(fā)展重點(diǎn)病種規(guī)范化診療項(xiàng)目(BE2015715)；江蘇省自然科學(xué)基金(BK20151592)

214500 江蘇省泰州市，江蘇省靖江市人民醫(yī)院神經(jīng)內(nèi)科(湯群英)；225001 江蘇省揚(yáng)州市，江蘇省蘇北人民醫(yī)院神經(jīng)內(nèi)科(徐俊，胡月，李琳，陶帶花，成佳星)；重癥醫(yī)學(xué)科(顧小花)；健康管理中心(洪音)

徐俊，Email：13611572068@126.com

R 749.16

A

10.3969/j.issn.1003-9198.2017.10.024

2017-05-15)