Patient experience in home respiratory therapies : where we are and where to go

Jou nal o Clinical Medicine Re iew Pa ien Expe ience in Home Respi a o y The apies: Whe e We A e and Whe e o Go Cá ia Canei as 1,2,†,* , C is ina Jácome 3,4,†, Sag a io Mayo alas-Alises 5,6, JoséRamon Cal o 6, João Almeida Fonseca 3,7,8, Joan Esca abill 9,10,11 and João Ca los Winck 12 1Ins i u e o En i onmen al Heal h (ISAMB), Facul y o Medicine, Uni e sidade de Lisboa, 1649-028 Lisboa, Po ugal 2Heal hca e Depa men , P axai Po ugal Gases, 2601-906 Lisboa, Po ugal 3CINTESIS-Cen e o Heal h Technologies and In o ma ion Sys ems Resea ch, Facul y o Medicine, Uni e si y o Po o, 4200-450 Po o, Po ugal; [email p o ec ed] (C.J.); [email p o ec ed] (J.A.F.) 4Respi a o y Resea ch and Rehabili a ion Labo a o y (Lab3R), School o Heal h Sciences (ESSUA), Uni e si y o A ei o, 3810-193 A ei o, Po ugal 5Se ice o Pneumology, Hospi al Uni e si a io Moncloa, 28008 Mad id, Spain; [email p o ec ed] 6Heal hca e Depa men , P axai Spain, 28020 Mad id, Spain; jose_ amon_cal o@p axai .com 7MEDCIDS-Depa men o Communi y Medicine, Heal h In o ma ion and Decision, Facul y o Medicine, Uni e si y o Po o, 4200-450 Po o, Po ugal 8Alle gy Uni , Ins i u o and Hospi al CUF, 4460-188 Po o, Po ugal 9Hospi al Clínic de Ba celona, 08036 Ba celona, Spain; [email p o ec ed] 10 Mas e Plan o Respi a o y Diseases (Minis y o Heal h) & Obse a o y o Home Respi a o y The apies (FORES), 08028 Ba celona, Spain 11 REDISSEC Heal h Se ices Resea ch on Ch onic Pa ien s Ne wo k, Ins i u o de Salud Ca los III, 28029 Mad id, Spain 12 Facul y o Medicine, Uni e si y o Po o, 4200-319 Po o, Po ugal; [email p o ec ed] *Co espondence: [email p o ec ed]; Tel.: +351-912-556-452 †These au ho s con ibu ed equally o his wo k. Recei ed: 5 Ma ch 2019; Accep ed: 23 Ap il 2019; Published: 24 Ap il 2019   Abs ac : The inc easing numbe o pa ien s ecei ing home espi a o y he apy (HRT) is imposing a majo impac on ou ine clinical ca e and heal hca e sys em sus ainabili y. The cu en challenge is o con inue o gua an ee access o HRT while main aining he quali y o ca e. The pa ien expe ience is a co ne s one o high-quali y heal hca e and an eme gen a ea o clinical esea ch. This e iew app oaches he assessmen o he pa ien expe ience in he con ex o HRT while highligh ing he Eu opean con ibu ion o his body o knowledge. This e iew demons a es ha esea ch in his a ea is s ill limi ed, wi h no example o a p esc ip ion model ha inco po a es he pa ien expe ience as an ou come and no speci ic pa ien - epo ed expe ience measu es (PREMs) a ailable. This wo k also shows ha Eu ope is leading he esea ch on HRT p o ision. The de elopmen o a speci ic PREM and he in eg a ion o PREMs in o he assessmen o p esc ip ion models should be clinical esea ch p io i ies in he nex se e al yea s. Keywo ds: Long- e m oxygen he apy; home mechanical en ila ion; pa ien - epo ed expe ience measu es; quali y o ca e; heal hca e; sus ainabili y 1. In oduc ion Long- e m oxygen he apy (LTOT) and/o home mechanical en ila ion (HMV) a e well-es ablished he apies o pa ien s wi h ch onic espi a o y ailu e, such as hose wi h ch onic obs uc i e pulmona y disease (COPD), neu omuscula diseases, and obs uc i e sleep apnea (OSA), among o he s. These J. Clin. Med. 2019,8, 555; doi:10.3390/jcm8040555 www.mdpi.com/jou nal/jcm J. Clin. Med. 2019,8, 555 2 o 24 he apies ep esen key se ices in he home espi a o y he apy (HRT) p o ided o hese pa ien s. Inc easing numbe s o pa ien s ecei ing HRT a e epo ed no only in Eu ope bu also wo ldwide [ 1 – 5 ]. Thus, HRT is imposing a majo impac on clinical ca e and heal hca e sys ems. O e he nex se e al yea s, he main challenge will be o ensu e a sus ainable heal hca e sys em o con inue o gua an ee access o HRT while main aining he quali y o ca e. Acco ding o he Wo ld Heal h O ganiza ion, quali y o ca e is de ined as “ he ex en o which heal h ca e se ices p o ided o indi iduals and pa ien popula ions imp o e desi ed heal h ou comes. In o de o achie e his, heal h ca e mus be sa e, e ec i e, imely, e icien , equi able and people-cen e ed” [ 6 ]. A necessa y s ep in he p ocess o main aining and imp o ing quali y is o moni o and e alua e he quali y o heal hca e in ou ine clinical p ac ice. Based on he eac i e, disease- ocused, and biomedical model, he indica o s o quali y ha e been mainly es ic ed o adi ional clinical me ics. A numbe o s udies conduc ed o e he las ew decades ha e add essed he bene icial e ec s o HRT on mo bidi y, mo ali y, and ad e se ou comes, as well as he a ia ions in HRT p o ision among coun ies [ 5 , 7 , 8 ]. Howe e , hese me ics alone do no p o ide a comple e pic u e o HRT quali y. The pa ien ’s expe ience o ea men is a co ne s one o high-quali y heal hca e [ 9 ]. Only by analyzing he ela ional and unc ional aspec s o he pa ien expe ience is i possible o assess he ex en o which pa ien s a e ecei ing ca e ha is in line wi h hei p e e ences, needs, and alues. The in eg a ion o he pa ien expe ience wi h heal hca e deli e y and quali y e alua ion a e key s eps in mo ing owa d pa ien -cen e ed and pe sonalized ca e [ 10 ]. As Doyle e al. sugges ed, he pa ien ’s expe ience is he hi d pilla o quali y, along wi h clinical sa e y and e ec i eness [ 11 ]. Howe e , i is only in ecen yea s ha pa ien s’ pe cep ions o heal hca e p o ision ha e s a ed o ecei e a en ion. This e iew app oaches he assessmen o he pa ien expe ience in he clinical con ex o HRT while highligh ing he Eu opean con ibu ion o his eme ging body o knowledge. 2. Pa ien Expe ience in he Con ex o HRT The pa ien expe ience in he con ex o HRT is e iewed wi h a ocus on wo main a eas: (1) HRT p esc ip ion models and he inclusion o he pa ien expe ience as an ou come o hese models and (2) me hods used o assess he pa ien expe ience. To add ess hese wo aims, a na a i e e iew was conduc ed. The sea ch, al hough no sys ema ic in na u e, included sea ches in elec onic da abases (PubMed, Medline, ISI Web o Knowledge and Google Schola ), as well as hand sea ches (expe consul a ion and a e iew o he e e ence lis s in he included pape s). The da abases we e sea ched be ween July and Decembe 2018 using opic- ela ed e ms, such as oxygen he apy, home mechanical en ila ion, nonin asi e mechanical en ila ion, home espi a o y he apy, home ea men , ch onic espi a o y insu iciency, ch onic espi a o y ailu e, epidemiology, p esc ip ion, quali y con ol, ou comes, pa ien expe ience, pa ien pe spec i e, ca e s, ca egi e s, pa ien - epo ed expe ience measu e, ques ionnai es, in e iews, and ocus g oups. The e was no ime es ic ion in he li e a u e sea ch, al hough i was limi ed o English, Po uguese, o Spanish. 2.1. P esc ip ion Models o HRT The e a e a numbe o s udies ha ha e assessed he p esc ip ion o HRT. Table 1summa izes 15 ele an s udies on his opic. The majo i y o he s udies (n=9) we e conduc ed om 2009 onwa d and p ima ily assessed he p esc ip ion o HMV (n=10) [ 4 , 5 , 12 – 19 ], ollowed by LTOT (n=6) [ 19 – 24 ]. The es ima ed p e alence o HMV ( om 2.5 o 23/100,000 popula ion) and o LTOT ( om 31.6 o 102/100,000 popula ion) we e a iable among dis inc egions o coun ies. The es ima ed p e alence o HMV in Eu ope was 6.6 pe 100,000 people, and Po ugal was one o he coun ies wi h he highes p e alence [5]. Th ee s udies epo ed he assessmen o HRT p esc ip ion a a egional le el (Ca alan, Spain; Hong Kong, China; Tasmania, Aus alia), eigh a a na ional le el (Sweden, Canada, Poland, Denma k, England, Aus alia, F ance, Spain), and ou a an in e na ional le el ( wo coun ies, se en coun ies, 13 Eu opean coun ies, 16 Eu opean coun ies). J. Clin. Med. 2019,8, 555 3 o 24 Table 1. S udies assessing he p esc ip ion o home espi a o y he apies. Au ho , Yea Region o Coun y, Yea s Analyzed Aim Me hod Da a Collec ion Resul s Eks öm e al., 2017 [20]Sweden, 1987–2015 Long- e m oxygen he apy (LTOT): incidence, p e alence, and he quali y o p esc ip ion and managemen Da a om he Swede ox egis y be ween 1 Janua y 1987 and 31 Decembe 2015 Da a: Bi h da e, Sex, P ima y/seconda y causes o LTOT, Follow-up, S op da e and s op cause, PaO2ai and PaCO2ai , PaO2oxygen and PaCO2oxygen, FEV1and VC, Wo ld Heal h O ganiza ion pe o mance s a us, Heigh and weigh , Ne e /Pas /Cu en smoke , Main enance ea men wi h o al co icos e oids, Oxygen dose, Oxygen du a ion. 23,909 pa ien s on LTOT. 48 espi a o y o medicine uni s. Incidence o LTOT inc eased om 3.9 o 14.7/100,000 inhabi an s o e he s udy ime pe iod. In 2015, 2596 pa ien s had ongoing he apeu ic LTOT in he egis y, a p e alence o 31.6/100,000. Adhe ence o p esc ip ion ecommenda ions and ul ilmen o quali y c i e ia we e s able o imp o ed o e ime. O pa ien s s a ing LTOT in 2015, 88% had se e e hypoxemia and 97% had any deg ee o hypoxemia; 98% we e p esc ibed oxygen o ≥15 hou s/day; 76% had bo h s a iona y and mobile oxygen equipmen ; 75% had a mean PaO2>8.0 kPa b ea hing oxygen; and 98% we e non-smoke s. Rose e al., 2015 [12]Canada, 2012–2013 Home mechanical en ila ion (HMV): na ional da a p o iling Su ey adminis e ed ia a web link om Augus 2012 o Ap il 2013 o se ice p o ide s deli e ing ca e/se ices o en ila o -assis ed indi iduals equi ing daily nonin asi e en ila ion (NIV) o in asi e mechanical en ila ion ia acheos omy a home. Su ey con en : p o ide cha ac e is ics, including se ices and educa ion p o ided; use cha ac e is ics (age, en ila ion ype, p ima y diso de , du a ion o en ila ion); c i e ia o ini ia ion and moni o ing en ila ion e ec i eness; equipmen ( en ila o s and in e aces used, en ila o se icing a angemen s and backup); aining and educa ion (audience, s uc u e, opics, ongoing compe ency assessmen ); liaisons and ansi ions ( e e al, ba ie s o ansi ion); ollow-up (s uc u e, equency, loca ion). Response a e 152/171 (89%). 4334 en ila o -assis ed indi iduals: an es ima ed p e alence o 12.9/100,000 popula ion. 73% ecei ing NIV and 18% ecei ing in e mi en manda o y en ila ion (9% no epo ed). Se ices we e deli e ed by 39 ins i u ional p o ide s and 113 communi y p o ide s. Va ious models o en ila o se icing we e epo ed. 64% o p o ide s s a ed ha ca egi e compe ency was a p e equisi e o home discha ge, bu epea ed compe ency assessmen and e aining we e o e ed by 45%. Ba ie s o home ansi ion: insu icien unding o paid ca egi e s, equipmen , and supplies; a sho age o paid ca egi e s; nego ia ing public unding a angemen s. J. Clin. Med. 2019,8, 555 4 o 24 Table 1. Con . Au ho , Yea Region o Coun y, Yea s Analyzed Aim Me hod Da a Collec ion Resul s Esca abill e al., 2015 [13] Ca alan Heal h Se ice (Spain), 2008–2011 HMV: p e alence and a iabili y in p esc ip ions Ca alan Heal h Se ice (Ca Salu ) billing da abase, be ween 2008 and 2011. No epo ed (NR) 240,760 pa ien s ecei ed some ype o HRT unded by he public sys em. 75.8% used con inuous posi i e ai way p essu e equipmen , 17.3% used a ious o ms o oxygen supply, 4.2% used nebulized he apy, 2.5% used HMV, and 0.2% used miscellaneous ea men s. 6,867 pa ien s ecei ed HMV, 23 use s pe 100,000 popula ion. Ra es o HMV inc eased by 39% o e he s udy pe iod Nasiłowski e al., 2015 [14]Poland, 2000–2010 HMV: ends o e he las decade Ques ionnai e designed speci ically o he s udy was sen o he heads o nine HMV cen e s Su ey Con en : Cen e de ails: loca ion, a ea o ac i i y (uni egional/mul i egional), and yea o ini ia ing HMV. Numbe o subjec s ea ed wi h HMV in each consecu i e yea . O e all numbe o ea ed subjec s, di ided in o i e disease ca ego ies: (1) neu omuscula diseases, (2) lung diseases (ch onic obs uc i e pulmona y disease (COPD), b onchiec asis, cys ic ib osis, in e s i ial diseases), (3) ches -wall diseases (scoliosis, ho acoplas y, ankylosing spondyli is, pos - ube culosis sequelae), (4) hypo en ila ion synd omes (due o obesi y, cen al congeni al hypo en ila ion synd ome, cen al sleep apnea), (5) o he diseases. Technique o en ila ion (in asi e and nonin asi e). Numbe o new cases; O e all numbe o subjec s ea ed wi h NIV o acheos omy. Age o he ea ed subjec s, Si e whe e en ila ion was ini ia ed: in ensi e ca e uni , espi a o y depa men , neu ology depa men , gene al medicine depa men , home, o o he . Nine HMV cen e s, 1495 subjec s Cen e expe ience 9 ±3 yea s (6–13 yea s) One cen e was dedica ed speci ically o child en, Two solely ea ed adul s, and o he cen e s ea ed subjec s i espec i e o age. In 2010, p e alence o HMV eached almos 2.5 subjec s/100,000. The majo i y o subjec s on HMV su e ed om neu omuscula diseases (100% in 2000–2002 o 51% in 2010). Subjec s wi h a diagnosis o espi a o y ailu e due o pulmona y condi ions appea ed in 2004, and he numbe o subjec s apidly inc eased beginning in 2007. In 2010, hey accoun ed o almos 25% o all HMV cases. Hypo en ila ion synd omes we e he hi d main diagnos ic g oup (4% un il 2008, eaching 11% in 2010). P opo ion o ches -wall diseases emained ~3%. In 2000 and 2001, en ila ion ia acheos omy was exclusi ely used. The i s subjec s on NIV we e ea ed in 2002. The numbe o subjec s on NIV was 1/3 in 2004 and hen le eled o o he ollowing i e yea s, ollowed by a apid inc ease un il 2010, when he p opo ions o subjec s ea ed wi h NIV and acheos omy equalized. Since 2008, he numbe o new cases ea ed nonin asi ely su passed he numbe o new cases ea ed wi h in asi e en ila ion, and in 2010, he o al numbe o subjec s in bo h g oups was i ually he same. J. Clin. Med. 2019,8, 555 5 o 24 Table 1. Con . Au ho , Yea Region o Coun y, Yea s Analyzed Aim Me hod Da a Collec ion Resul s Ga ne e al., 2013 [15] Aus alia and New Zealand, 2002–2004 HMV HMV cen e s ha had p esc ibed HMV o mo e han h ee mon hs o mo e han i e adul pa ien s. A designed su ey. Su ey Con en : (1) Ins i u ional de ails: loca ion, ype (e.g., e ia y), unding (e.g., go e nmen ), pa ien ca chmen , yea s o se ice; (2) C i e ia o HMV p esc ip ion by disease g oup (e.g., COPD); (3) HMV se ice de ails: numbe o pa ien s ecei ing HMV, s a ing le els, me hods o implemen a ion by loca ion/ es s u ilized/s a in ol ed, me hods o ollow-up by loca ion/ es s u ilized/s a in ol ed (0–3 g ading om ne e o always), annual clinic a endances, p esence o an ou each se ice; (4) Indi idual pa ien da a (i a ailable): age, gende , p ima y indica ion o HMV, du a ion o he apy, adhe ence o he apy, in e ace, machine se ings (mode, inspi a o y posi i e ai way p essu e, expi a o y posi i e ai way p essu e, back-up a e); (5) Local da abase: cu en da abase o ha cen e , da a collec ed, wha da a should be collec ed, suppo o c ea ion o a na ional da abase, cen e willing o pa icipa e; (6) P oblems encoun e ed wi h se ing up an HMV se ice. 28 cen e s (82%) esponded, p o iding da a on 2725 pa ien s. P e alence o HMV was 9.9 pa ien s/100,000 in Aus alia and 12.0 pa ien s/100,000 in New Zealand. Va ia ion exis ed among Aus alian s a es ( ange 4–13 pa ien s/100,000) co ela ing wi h popula ion densi y ( =0.82, p<0.05). The commones indica ions o ea men we e obesi y hypo en ila ion synd ome (31%) and neu omuscula disease (30%). COPD was an uncommon indica ion (8%). No consensus on indica ions o commencing ea men was ound. J. Clin. Med. 2019,8, 555 6 o 24 Table 1. Con . Au ho , Yea Region o Coun y, Yea s Analyzed Aim Me hod Da a Collec ion Resul s Ringbaek e al., 2013 [21] Denma k, 2001–2010 (LTOT: incidence, p e alence, ea men modali ies, and su i al in COPD. Danish Oxygen Regis e in he pe iod om 01 Janua y 2001 o 31 Decembe 2010: in o ma ion on pa ien s on home oxygen he apy, hei p esc ip ions, and e mina ion o he apy. Na ional Heal h Se ices Cen al Regis e : in o ma ion on diagnosis o LTOT and on i al s a us up o 31 Decembe 2011. NR On 31 Dec 2001, a o al o 2247 COPD pa ien s (42.0/100,000) we e ecei ing LTOT. The numbe o pa ien s on LTOT had inc eased cons an ly o each a p e alence o 48.1/100,000 in 2010. Incidence o oxygen he apy inc eased insigni ican ly om 30.5 o 32.2/100,000. The majo i y o COPD pa ien s we e women and olde han 70 yea s o age. The mean age o pa ien s who s a ed LTOT du ing he s udy pe iod inc eased om 73.4 ±9 yea s o 74.8 ±9.7 yea s. Mos o he COPD pa ien s we e p esc ibed oxygen he apy by a hospi al doc o immedia ely a e an acu e hospi aliza ion, and he numbe o p esc ip ions om gene al p ac i ione s was con inuously declining owa d ze o du ing he s udy pe iod. An inc easing numbe o he COPD pa ien s we e p esc ibed oxygen a leas 15 h daily and had deli e ed oxygen concen a o and mobile oxygen, whe eas, in gene al, he oxygen low emained low (≤1.5 L/minu e). Compa ed wi h men, women s a ed LTOT mo e o en in connec ion wi h hospi aliza ion and mo e o en s opped LTOT wi hin he i s 6 mon hs. Women we e p esc ibed a lowe oxygen low han men and he ea men was mo e o en speci ied o ake place o 15–24 h pe day. J. Clin. Med. 2019,8, 555 7 o 24 Table 1. Con . Au ho , Yea Region o Coun y, Yea s Analyzed Aim Me hod Da a Collec ion Resul s Mandal e al., 2013 [16]England, NA HMV: p e alence o sleep and en ila ion diagnos ic and ea men se ices A sho su ey deli e ed by email o 101 NHS Hospi als Su ey con en : 10-i em su ey, ocused on diagnos ic se ices and HMV p o ision: (a) a ailabili y o diagnos ics, (b) unding; (c) pa ien g oups. 76 (68%) esponses ecei ed; 42 (55%) us s epo ed he p o ision o an HMV se ice. Only 65% o uni s cha ged o he deli e y o an HMV se ice, wi h 12% o hese se ices commissioned by an ex e nal p o ide . Median se -up equency o he uni s cha ging was 42 pa ien s pe annum (in e qua ile ange 23–73), whe eas hose uni s ha ailed o cha ge had a median o 11 (in e qua ile ange 4–22). O all he HMV se -ups, 67% we e o obesi y- ela ed espi a o y ailu e and COPD, wi h he o he es ic i e lung condi ions o ming he emainde Se ginson e al., 2009 [22] Aus alia, 2004–2005 LTOT: p esc ip ion and cos s Da a om all LTOT se ices in Aus alian Go e nmen ’s depa men s and heal h se ices (s a e and ede al) Cen alized depa men s managing s a e budge s o LTOT p o ided cos s ( o he inancial yea 2004–2005) and pa ien numbe s (poin p e alence in 2005). I cen alized da a we e no a ailable, egional depa men s adminis e ing LTOT se ices we e con ac ed. Da a: Cos s we e de ined as “equipmen only” ( ees paid o oxygen companies) o “equipmen and adminis a i e” (wages and non-labo cos s o adminis e ing p og ams included). 20,127 pa ien s (100/100,000) h ough 59 di e en se ices a a cos o o e $31 million. P esc ip ion a es o LTOT pe 100,000 popula ion wi hin each s a e anged om 44 o 133, a h ee old di e ence. Cos s o LTOT pe pa ien p esc ibed pe yea unded by indi idual s a es and e i o ies anged om $1014 o $2574. The cos o oxygen concen a o s a e aged $85 pe mon h ( ange, $29–$109), po able oxygen anged om $16 o $35 pe mon h wi hou e ills, and, wi h a conse e included, $55 ( wo e ills) o $166 unlimi ed e ills) pe mon h. All se ices p o ided concen a o s o home use. Po able oxygen was unded in all s a es, excep one (whe e i was limi ed o child en and pa ien s wai ing o hea o lung ansplan s). J. Clin. Med. 2019,8, 555 8 o 24 Table 1. Con . Au ho , Yea Region o Coun y, Yea s Analyzed Aim Me hod Da a Collec ion Resul s Jones e al., 2007 [23] Tasmania (Aus alia), 2002–2004 LTOT Reco ds o all pa ien s ecei ing Tasmanian Go e nmen - unded LTOT be ween Decembe 2002 and Ap il 2004 Da a: Recipien demog aphics, Indica ions o LTOT, Oxygen p esc ip ion, Time o ollow-up. The se ice p o ide p o ided usage epo s and cos s. Ap il 2004: 490 pa ien s ecei ing LTOT Ra e o 102/100,000; Median age a p esc ip ion o LTOT was 71.5 ( ange 0.7–97.2) yea s, and 54% o pa ien s we e emale. Oxygen was p esc ibed o 267 pa ien s (54%) du ing hospi aliza ion, al hough only 192 o hese pa ien s (72%) me c i e ia o oxygen use a his ime. LTOT was p esc ibed by espi a o y physicians o 248 pa ien s (51%) and by o he hospi al physicians o mos o he emaining pa ien s (39%). Da a on indica ions we e a ailable o 430 pa ien s (88%), and COPD accoun ed o 48% o p esc ip ions, bu his p opo ion a ied egionally. Median ime o eassessmen was 5.5 ( ange, 0.1–116) mon hs, bu a ied be ween egions. Usage da a we e a ailable o 175 pa ien s (41%) using oxygen concen a o s in Ap il 2004. O hese 175 pa ien s, 122 (70%) we e p esc ibed oxygen o COPD. In his g oup, he median use was 18.3 ( ange, 0.38–24) hou s pe day; howe e , 36 (30%) had a median use <15 hou s/day. J. Clin. Med. 2019,8, 555 9 o 24 Table 1. Con . Au ho , Yea Region o Coun y, Yea s Analyzed Aim Me hod Da a Collec ion Resul s Lloyd-Owen e al., 2005 [5] 16 Eu opean coun ies (Aus ia, Belgium, Denma k, Finland, F ance, Ge many, G eece, I eland, I aly, Ne he lands, No way, Poland, Po ugal, Spain, Sweden, UK), 2001–2002 HMV: pa e ns o use ac oss Eu ope Ques ionnai e o cen e de ails, HMV use cha ac e is ics and equipmen choices sen o selec ed HMV cen e s Su ey Con en : Cen e ( ype o ins i u ion and yea o s a ing HMV), Numbe o HMV use s on 01 July 2001, Use s’ cha ac e is ics (sex, age, and ime on HMV). Use s’ causes o espi a o y ailu e: (1) Lung: lung and ai way diseases: COPD, cys ic ib osis, b onchiec asis, pulmona y ib osis, and pedia ic diseases, including b onchopulmona y dysplasia; (2) Tho : ho acic cage abno mali ies: ea ly-onse kyphoscoliosis, ube culosis sequelae such as ho acoplas y, obesi y hypo en ila ion synd ome, and sequelae o lung esec ion; (3) Neu : neu omuscula diseases: muscula dys ophy, mo o neu on disease (including amyo ophic la e al scle osis), pos -polio kyphoscoliosis, cen al hypo en ila ion, spinal co d damage, and ph enic ne e pa alysis. Type o en ila o and in e ace used. 329 cen e s comple ed su eys, 21,526 HMV use s; Es ima ed p e alence o HMV was 6.6/100,000 in he 16 Eu opean coun ies. Di e ences be ween coun ies in he ela i e p opo ions o (1) lung and neu omuscula pa ien s using HMV and (2) he use o acheos omies in lung and neu omuscula HMV use s. Lung use s we e linked o an HMV du a ion o <1 yea , ho acic cage use s wi h 6–10 yea s o en ila ion and neu omuscula use s wi h a du a ion o ≥6 yea s. Almos all o he HMV use s had posi i e p essu e en ila o s, wi h only 0.005% (79 use s) ha ing o he ypes. Volume p ese posi i e p essu e en ila o s we e used he leas o lung p oblems and mos equen ly o neu ological p oblems (% olume: Lung 15%; Tho 28%; Neu 41%). O e all, 13% o he su ey popula ion had en ila ion ia a acheos omy wi h he highes pe cen age in neu omuscula pa ien s (Neu 24%; Tho 5%; Lung 8%). Chu e al., 2004 [17] Hong Kong (China), 2002 HMV Su ey o consul an s o espi a o y medicine in all adul medical depa men s o Hong Kong Hospi al Au ho i y hospi als o epo hei adul pa ien s (>18 yea s) who had e e been managed by HMV Su ey con en : demog aphic da a, mode o en ila ion (non-in asi e o acheos omy en ila ion), unde lying disease, indica ions o HMV, ime o s a ing en ila ion, ime and eason o s opping en ila ion, i any, in he ollow-up pe iod. 249 cases epo ed o he su ey om 14 cen e s o adul espi a o y medicine; 156 males (62.7%) and 93 emales (37.3%) wi h a mean age o 62.7 ±13.8 yea s; 80% o HMV cases we e unde he ca e o six majo cen e s. 197 cases we e con inuing wi h HMV, co esponding o ~2.9 HMV use s pe 100,000 popula ion. The majo i y (n=236, 94.8%) we e ea ed by nonin asi e en ila ion (NIV), wi h he emaining 13 pa ien s (5.2%) ecei ing acheos omy en ila ion. All NIVs we e p o ided by bile el p essu e-suppo en ila o s. All acheos omized cases we e pu on HMV a e epea ed ailu es o wean. The disease condi ions o which HMV was p esc ibed: COPD (121, 48.6%); Complica ed obs uc i e sleep apnea/obesi y hypo en ila ion synd ome (43, 17.2%); and Res ic i e ho acic diso de s (85, 34.1%). J. Clin. Med. 2019,8, 555 16 o 24 Table 2. Con . Ins umen Popula ion Se ing Language Concep s S uc u e Measu emen P ope ies Heal h Se ices Ou Pa ien Expe ience (HSOPE): global ou come measu e o pe cei ed pa ien -cen e edness o he ou pa ien heal hca e pa hway [35] Tes ed in 1532 adul ou pa ien s (≥16 yea s) ecei ing ca e (including ehabili a ion). Hospi al I alian Pe cei ed echnical e ec i eness o he s a , In o ma ion on modali ies o he ou pa ien isi , on he isi ou comes, and he cou se o he heal hca e pa hway, Rela ional aspec s o ou pa ien –s a in e ac ion, In ol emen in decision making. 10 s a emen s sco ed using a i e-poin Like scale om 1 (ne e ) o 5 (always) 1 i em sco ed using a 10-poin scale om 1 ( e y dissa is ied) o 10 ( e y sa is ied). Th ee sociodemog aphic ques ions (sex, age, and esidence). One ques ion abou sugges ions o imp o e ou pa ien isi s. Reliabili y Validi y In e media e ca e-IC-PREMs: Bed-Based Pa ien -Repo ed Expe ience Measu e [41] Tes ed in 1832 adul pa ien s. Bed-based IC se ices English I alian Goal Se ing, Empowe men , Sel -Managemen , Ca e-Planning, T ansi ions, Decision Making, Communica ion. 15 ques ions sco ed using wo, h ee, o ou esponse ca ego ies. Reliabili y Validi y IC-PREMs: home-based (and eablemen -based) Pa ien -Repo ed Expe ience Measu e [41] Tes ed in 4627 adul pa ien s. Home-based o eablemen IC se ices English I alian Goal Se ing, Empowe men , Sel -Managemen , Ca e-Planning, T ansi ions, Decision Making, Communica ion. 15 ques ions sco ed using wo, h ee, o ou esponse ca ego ies. Reliabili y Validi y J. Clin. Med. 2019,8, 555 17 o 24 Table 2. Con . Ins umen Popula ion Se ing Language Concep s S uc u e Measu emen P ope ies IEXPAC, Ins umen o E alua ion o he Expe ience o Ch onic Pa ien s [29] Tes ed in 356 pa ien s (≥16 yea s) wi h ch onic diseases (20% wi h COPD). Heal h and social se ices Spanish Type and scope o pa ien and p o essional in e ac ions o ien ed o pa ien ac i a ion. Pa ien ’s sel -managemen capaci y o his/he wellbeing esul ing om he in e en ions ecei ed. New ela ional model o he pa ien wi h he sys em h ough he in e ne o wi h pa ne s in g oup in e en ion. 11 +1 i ems sco ed using a i e-poin scale om 0 (ne e ) o 10 (always). Since 2018, a new e sion wi h 11 +4 i ems is used, wi h h ee addi ional i ems. Reliabili y Validi y Li eCou se expe ience ool [33] Tes ed in 607 adul pa ien s wi h eme gency depa men and in-pa ien u iliza ion, ad anced p ima y diagnosis o hea ailu e, cance , o demen ia. Home, Nu sing Homes, Assis ed li ing English Ca e Team, Communica ion, Ca e Goals. 22 i ems sco ed using a ou -poin scale om 1 (Ne e o S ongly Disag ee) o 4 (Always o S ongly Ag ee). Reliabili y Validi y Mul idimensional Seman ic Pa ien Expe ience Measu emen Ques ionnai e [37] Tes ed in 60 pa ien s (≥15 yea s) unde going a magne ic esonance scan. Hospi al English E alua ion/ alence, Po ency/con ol, Ac i i y/a ousal, No el y. 12 a ing scales using a se en-poin bipola a ibu e a ing scales: ‘ex emely’, ‘qui e’, ‘sligh ly’, ‘nei he ’, ‘sligh ly’, ‘qui e’, and ‘ex emely’. Reliabili y J. Clin. Med. 2019,8, 555 18 o 24 Table 2. Con . Ins umen Popula ion Se ing Language Concep s S uc u e Measu emen P ope ies PEQ: Pa ien expe ience ques ionnai e 2001 [39] Tes ed in 1092 pa ien s (1–91 yea s)/ca e s P ima y ca e No wegian Communica ion, Emo ions, Sho - e m ou come, Ba ie s, Rela ions wi h auxilia y s a . To al 18 i ems: Fou i ems using a i e-poin scale om 1 (‘no mo e’ o ‘no hing’) o 5 (‘much mo e’ o ‘a lo ’). 10 i ems using a i e-poin scale om 1 (disag ee comple ely) o 5 (ag ee comple ely). Fou i ems we e o med on se en-poin scales. Reliabili y Validi y PEQ: Pa ien Expe iences Ques ionnai e 2004 [38] Tes ed in 19578 pa ien s (≥16 yea s) wi h expe ience wi h su gical wa ds and wa ds o in e nal medicine Hospi al No wegian In o ma ion on u u e complain s, Nu sing se ices, Communica ion, In o ma ion examina ions, Con ac wi h nex -o -kin, Doc o se ices, Hospi al and equipmen , In o ma ion medica ion, O ganiza ion, Gene al sa is ac ion. 35 i ems wi h 10-poin o dinal esponse scales om 1 (nega i e) o 10 (posi i e). Reliabili y Validi y PACIC: Pa ien Assessmen o Ch onic Illness Ca e [34,44] Tes ed in 4108 adul pa ien s wi h diabe es, ch onic pain, hea ailu e, as hma, co ona y a e y disease. Ch onic ca e managemen English Pa ien ac i a ion, Deli e y sys em design, Goal se ing, P oblem sol ing, Follow-up/coo dina ion. Focuses on he eceip o pa ien -cen e ed ca e and sel -managemen beha io s. 20 i ems using a i e-poin scale om 1 (Almos Ne e ) o 5 (Almos Always). Reliabili y Validi y J. Clin. Med. 2019,8, 555 19 o 24 Table 2. Con . Ins umen Popula ion Se ing Language Concep s S uc u e Measu emen P ope ies ACES-SF: Ambula o y Ca e Expe iences Su ey [40] Tes ed in 49,861 adul pa ien s. P ima y ca e English Quali y o physician–pa ien in e ac ion, Heal h p omo ion suppo , Ca e coo dina ion, O ganiza ional access, O ice s a in e ac ions, An addi ional i em o assess pa ien s’ willingness o ecommend he physician o amily and iends. 18 i ems using con inuous esponses: Ne e , Almos ne e , some imes, Usually, Almos always, Always; o Yes, de ini ely, Yes, somewha , No, de ini ely no ; o De ini ely yes, P obably yes, No su e, P obably no , De ini ely no . Reliabili y Validi y J. Clin. Med. 2019,8, 555 20 o 24 2.2.2. Indi idual In e iews and Focus G oups Quali a i e s udies ha explo e he expe ience o pa ien s ecei ing HRT a e s ill limi ed in he li e a u e. Ne e heless, he li e a u e e iew e ealed some s udies ha explo ed he expe ience o pa ien s li ing wi h COPD, pulmona y ib osis, and OSA. These s udies speci ically ocused on pa ien s’ needs and he adap a ion p ocess o espi a o y he apies. Two s udies explo ed he pa ien ’s expe ience wi h LTOT [ 45 , 46 ], and he o he s assessed he pa ien ’s expe ience wi h non-in asi e en ila ion [ 47 – 51 ]. These s udies we e conduc ed in he Uni ed S a es o Ame ica [ 45 , 47 ], New Zealand [ 48 , 49 ], he Uni ed Kingdom [ 50 ], Sweden [ 51 ], and Spain [ 46 ] and included bo h adul pa ien s and ca e s. Two e iews we e also ound on he needs o pa ien s wi h COPD and we e also used in he p esen analysis [ 52 , 53 ]. F om he analysis o hese s udies, i was possible o clea ly iden i y educa ion, aining, suppo , and ca e in ol emen as impo an key-poin s in acili a ing a pa ien ’s ea men expe ience and subsequen adhe ence. Below, each one o hese ou key-poin s is desc ibed in de ail. Educa ion: on he basis o he pe spec i es o pa ien s, i is appa en ha educa ion is c ucial o de ining clea expec a ions abou he ea men and mo i a ing pa ien adhe ence. The main educa ion opics aised by pa ien s ecei ing espi a o y he apies a e ela ed o disease sel -managemen (e.g., COPD, OSA); physical e ec s and po en ial clinical bene i s o he espi a o y he apy; isks o no using he espi a o y he apy; guidance on he use and unc ion o equipmen (e.g., con inuous posi i e ai way p essu e (CPAP) de ices, oxygen concen a o s, how o use pulse oxime e s and adjus low wi h exe ion); side e ec s and guidance on i s managemen (skin p o ec ion, d y mou h, nasal conges ion, i i a ed eyes); a eling wi h equipmen ; ollow-up appoin men s; and assis ance wi h inancial elemen s (e.g., how o claim elec ici y cos s) [45,46,49,50]. T aining: o mal aining on app op ia e equipmen use has been sugges ed o be an impo an s a egy o imp o ing adhe ence [ 46 – 51 ]. Heal hca e p o essionals need o in oduce he de ice, explo e possible p ac ical p oblems, and gi e ad ice/help o sol e hese p oblems. In hei ini ial expe iences wi h espi a o y he apy, pa ien s should ha e a hands-on demons a ion o se ing up he de ice, ialing di e en masks/p essu es, making mask adjus men s, conque ing di e en side-e ec s, and inding he bes posi ion o he ubing o machine (also conside ing he loudness o he de ice). Regula ollow up isi s o phone calls a e impo an o assess p ac ical p oblems being expe ienced (e.g., p essu e om he mask, mask leakage, dis u bing noise, and di icul ies changing sleeping posi ions) and o discuss e ec i e s a egies o add ess hem. Suppo : es ablishing a us wo hy ela ionship wi h heal hca e p o essionals a e he ini ia ion o espi a o y he apy is pe cei ed as help ul by pa ien s, and hese ela ionships posi i ely in luence hei adhe ence [ 46 ]. Heal hca e p o essionals need o os e a non-judgmen al en i onmen in which pa ien s ha e oppo uni ies o ask ques ions, sha e conce ns and eelings, eel lis ened o, and eel unde s ood. This is pa icula ly impo an ollowing he ini ia ion o he apy [ 47 ], as ques ions o conce ns a e mo e likely o a ise du ing he i s days o weeks o ea men [ 49 , 52 ]. These oppo uni ies can a ise du ing egula ollow-up isi s, scheduled ollow-up phone calls, and h ough access o a 24-h ho line [47]. Ca e in ol emen : ca e s p o ide subs an ial ca e (emo ional, physical) o he indi idual on a daily basis and, mos o he ime, li e in he same house as he pa ien . On he basis o hei impo an ole in pa ien s’ li es, ca e in ol emen has been ound o be essen ial o pa ien s ecei ing HRT [ 45 – 48 , 50 – 53 ]. Pa ien s ecognize ha ca e s play a majo ole in hei ea men by helping hem manage he disease and adap o he equipmen (e.g., e bal eminde s, encou agemen , se ing up he machine, making mask adjus men s, eassu ance o he apy bene i s). Ca e s hemsel es ecognize hei need o in o ma ion ega ding aspec s o he disease and bene i s o he HRT [ 47 ]. Ca e in ol emen is hus pe cei ed by all s akeholde s as an essen ial componen o educa ion and aining om he beginning o ea men [ 45 , 47 , 48 , 50 – 53 ], and i is gene ally associa ed wi h posi i e esul s, namely, he pa ien s’ adop ion and adhe ence o HRT [47,53]. J. Clin. Med. 2019,8, 555 21 o 24 3. Discussion This comp ehensi e e iew is a i s c i ical s ep owa d he assessmen o he pa ien expe ience in he clinical con ex o HRT. I demons a es ha esea ch in his a ea is s ill limi ed, wi h no example o an HRT p esc ip ion model ha inco po a es he pa ien expe ience as an ou come and wi h no speci ic PREM a ailable. This e iew also shows ha Eu opean coun ies ha e been in ol ed in HRT p o ision esea ch om an ea ly s age. Mos o he esea ch on he assessmen o HRT p esc ip ion models has been conduc ed wi hin he las decade and mainly in Eu opean coun ies, highligh ing he eme gen in e es and Eu ope’s leading posi ion in his a ea o heal h esea ch. In addi ion, HMV has a ac ed mo e a en ion om he scien i ic communi y in compa ison wi h LTOT. Ques ionnai es we e ound o be he p e e ed me hod o da a collec ion, howe e , exis ing da abases om HRT egis ies o heal h se ices ha e also been used. Da abases in compa ison wi h ques ionnai es ha e he ad an age o gene a ing mo e ep esen a i e da a and may be a me hod o choice in u u e s udies. The pa ien expe ience has no been examined in he assessmen o he p esc ip ion models p esen ed. While his eali y was expec ed om he oldes s udies, i was qui e a su p ising esul o hose om he las decade. These esul s show ha , un il now, he assessmen o pa ien s’ pe cep ions has no been seen as a p io i y in he assessmen o p esc ip ion models. Un o una ely, his is also a eali y in o he heal h con ex s and se ings [ 10 ]. The O ganisa ion o Economic Co-ope a ion and De elopmen (OECD) and Eu ope in “Heal h a a Glance: Eu ope 2018” epo ed c i ical gaps in he da a on pa ien - epo ed expe ience, and hey ecommended collec ing da a on he pa ien expe ience om any doc o in ambula o y ca e se ings [ 10 ]. Thus, u u e s udies on he p o ision o HRT should add ess his impo an gap in he li e a u e. To add ess his gap, we need o be awa e o he cu en me hods being used o assess he pa ien expe ience. Di e en ins umen s used a dis inc le els o heal hca e a e a ailable and desc ibed in his e iew. These ins umen s we e de eloped o be comple ed by adul pa ien s and, in some cases, by ca e s o child en. In ou opinion, al hough he ca e s’ pe spec i e is, o cou se, inc edibly aluable, i should do no eplace he child en’s expe ience. The de elopmen o PREMs o pedia ic popula ions is c ucial o he collec ion o in o ma ion on he expe ience and ou come o child en’s ca e. Addi ionally, as p e iously men ioned, none o he ins umen s ha e been speci ically designed o assess he pa ien ’s expe ience wi h HRT. The de elopmen o a speci ic PREM o his heal h con ex should be a esea ch p io i y in he upcoming yea s. The mos commonly assessed domains in he desc ibed ins umen s, including he ERS/ELF su ey, oge he wi h he key acili a o s o he pa ien ’s ea men expe ience, can be used as impo an sou ces o da a o in o m he de elopmen o a comp ehensi e ins umen . Access o in o ma ion and suppo , implemen a ion o e ec i e and clea communica ion, ac i e pa icipa ion in sha ed decision making, enhanced accessibili y and na igabili y ac oss he heal hca e sys em o pa ien s and amilies, pa icula ly ac oss ansi ional ca e, and managemen o polypha macy a e known o in luence he pa ien expe ience in o he heal hca e se ings and could be opics o in e es o be included in u u e PREMs o pa ien s on HRT [ 54 ]. Fu u e s udies should explo e which o hese aised opics a e indeed meaning ul o pa ien s and ca e s. On he basis o quali a i e s udies, i was ound ha educa ion, aining, suppo , and ca e in ol emen we e impo an key-poin s in acili a ing he pa ien ’s ea men expe ience and adhe ence. This knowledge comes mainly om he pe spec i e o adul pa ien s wi h COPD, pulmona y ib osis, and OSA ecei ing CPAP and om hei ca e s. These s udies we e conduc ed in i e coun ies ( h ee om Eu ope) [ 45 – 53 ]. Thus, his e idence may no comple ely apply o he expe ience o younge pa ien s (including child en) and ha o hei ca e s o o pa ien s wi h o he diseases and o he ea men modali ies (e.g., Bile el Posi i e P essu e Ai way, LTOT) and om o he coun ies/con inen s. Conside ing hese iden i ied gaps, he expe ience o o he pa ien s ecei ing HRT could be explo ed in u u e s udies. The iden i ied key-poin s may in o m he de elopmen p ocess o semi-s uc u ed guides o ocus g oups o indi idual in e iews o be used in hese explo a o y s udies. J. Clin. Med. 2019,8, 555 22 o 24 4. Conclusions To he au ho s’ bes knowledge, his is he i s published wo k o e iew he eme ging opic o he pa ien expe ience in he clinical con ex o HRT and gi e impo an insigh s in o he s a us o his clinical esea ch a ea while also poin ing ou possible di ec ions in which o mo e o ealize pa ien -cen e ed ca e. The assessmen o he pa ien expe ience is in i s ea ly s ages, and u he esea ch is needed o in eg a e hese measu es wi h ou ine heal hca e deli e y and he co e se o heal hca e quali y indica o s, as well as and o d i e quali y imp o emen s in HRT. Au ho Con ibu ions: Concep ualiza ion, C.C., C.J., J.A.F., J.E., and J.C.W.; w i ing—o iginal d a p epa a ion, C.C. and C.J.; w i ing- e iew and edi ing, S.M.A., J.R.C., J.A.F., J.E., and J.C.W.; p ojec adminis a ion, C.C., S.M.A., J.R.C., and J.C.W. Funding: C.J. has a pos -doc o al g an (SFRH/BPD/115169/2016) unded by Fundaç ã o pa a a Ci ê ncia e a Tecnologia (FCT), co- inanced by he Eu opean Social Fund (POCH) and Po uguese na ional unds om MCTES (Minis é io da Ciência, Tecnologia e Ensino Supe io ). Con lic s o In e es : The au ho s decla e no con lic o in e es . Re e ences 1. C ans on, J.; C ocke , A.; Moss, J.; Alpe s, J. Domicilia y oxygen o ch onic obs uc i e pulmona y disease. Coch ane Da abase Sys . Re . 2005,4, CD001744. [C ossRe ] [PubMed] 2. Annane, D.; O likowski, D.; Che e , S. Noc u nal mechanical en ila ion o ch onic hypo en ila ion in pa ien s wi h neu omuscula and ches wall diso de s. Coch ane Da abase Sys . Re . 2014 ,12, CD001941. [C ossRe ] [PubMed] 3. Melo, I. Alguns dados sob e a Assis ê ncia Respi a ó ia Domicili á ia em Po ugal. Re . Po . Pneumol. 1997 ,3, 481–492. [C ossRe ] 4. De Lucas Ramos, P.; Rod í guez Gonz á lez-Mo o, J.M.; San a-C uz Siminiani, A.; Cubillo Ma cos, J.M.; Paz Gonz á lez, L. 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