Health perceptions and treatment adherence in adults with cystic fibrosis

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hrax 199;51: Department f Psychlgy, University f Central Lancashire, Prestn PRI 2HE, UK J Abbtt Bradbury Cystic Fibrsis Unit, Wythenshawe Hspital, Suthmr Rad, Manchester M23 9L, UK M Ddd A K Webb
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hrax 199;51: Department f Psychlgy, University f Central Lancashire, Prestn PRI 2HE, UK J Abbtt Bradbury Cystic Fibrsis Unit, Wythenshawe Hspital, Suthmr Rad, Manchester M23 9L, UK M Ddd A K Webb Crrespndence t: Dr A K Webb. Received 22 December 1995 Returned t authrs 13 March 199 Revised versin received 17 June 199 Accepted fr publicatin 24 June 199 Health perceptins and treatment adherence in adults with cystic fibrsis Janice Abbtt, Mary Ddd, A Kevin Webb Abstract Backgrund - Clinical and demgraphic variables are pr predictrs f treatment adherence. his study therefre examined the relatinships between the patients' perceptin ftheir cystic fibrsis and their reprted adherence t physitherapy, exercise, pancreatic enzyme and vitamin therapies. Methds - Sixty adults with cystic fibrsis cmpleted the Health Perceptin Scale, Health Lcus f Cntrl Scale, and the Manchester Adult Cystic Fibrsis Cmpliance Questinnaire. Results - Reprted adherence t physitherapy, exercise, pancreatic enzyme and vitamin therapies was nt influenced by patients' perceptins f their past, current and future disease severity, r their perceived susceptibility t recurrent infectins. he greater their level f wrry regarding their disease, the mre likely they were t adhere t their physitherapy (p .2), pancreatic enzyme (p .1) and vitamin (p .1) regimens. N difference between the exercise adherent and nn-adherent grups emerged regarding their level f wrry. Cmpared with patients wh believed that they were in cntrl f their health, thse wh believed that their cystic fibrsis was cntrlled by thers (family and health prfessinals) reprted greater levels f adherence t their physitherapy (p o.oo1), pancreatic enzyme (p .1) and vitamin (p .1) therapies. In cntrast, patients wh adhered t their exercise regimen believed that they were in cntrl f their disease t a greater extent than thse wh did nt (p .3). Cnclusins - Wrrying abut cystic fibrsis and the perceptin f having little persnal cntrl ver the disease facilitated treatment adherence. It is clear that patients perceive exercise therapy differently frm ther frms f treatment. (hrax 199;51: ) Keywrds: cystic fibrsis, adherence, health perceptins. Increasing numbers f patients with cystic fibrsis are nw surviving int adulthd. Over individuals in the UK have the disease, mre than 2 f which are adults. he natinal median age f survival is currently 25 years.' he daily management invlves a cmplex time-cnsuming range f treatments and 1233 self care. A significant imprvement in survival has been attributed t earlier diagnsis, multidisciplinary specialist centre care, and mre effective methds f treatment. Adherence t treatment may be an imprtant factr in the successful management f the disease. As yet there are n cnclusive data linking pr treatment adherence and prgressive disease in cystic fibrsis, althugh it is cmmnly assumed that the cnsequences f pr adherence are infective exacerbatins, disease prgressin, the csts f wasted drugs, increased utpatient visits and hspital admissins, and errneus cnclusins abut the efficacy f the treatment. Pr adherence is a cmmn prblem even with life threatening disrders. Five hundred and thirty seven studies reviewed by Sackett and Snw2 in 1979 indicated that the range f adherence fr lng term preventative regimens was 33-94% with a mean adherence rate f 57%. Similarly, fr lng term treatments the range was 41-1 % with a mean adherence rate f 54%. Mre recent wrk is cnsistent with these findings. Only 32% f patients with epilepsy were cnsidered adherent with their treatment,3 12-% f children with asthma were nn-adherent,4 and 5% f renal dialysis patients shwed pr adherence.5 An verall adherence scre, hwever, fails t recgnise that patients may adhere t ne aspect f their treatment but nt t thers. Previus findings frm ur clinic have demnstrated that reprted adherence is treatment specific in cystic fibrsis, 53% f patients reprted being adherent t their physitherapy, 75% were cnsidered t be exercising t a beneficial level, and 3% and 4% f patients reprted that they always tk their enzymes and vitamins, respectively. Wrk by Passer et alf als supprts the ntin f treatment specific adherence. he search fr the determinants f pr adherence is encuraged in the hpe f being able t predict thse at risk and thereby design interventins fr imprving adherence. Demgraphic factrs (age, sex, knwledge f disease, emplyment status) and clinical factrs (disease severity, age at diagnsis, frequency f clinic visits) have been evaluated as pssible predictrs f adherence in cystic fibrsis with equivcal results. 12 Accrding t the Health Belief Mdel'3 patients' perceptins f their illness as serius, feelings f susceptibility, a belief that the treatment is beneficial, and a mtivatin r cncern fr ne's health shuld theretically predict adherence rather than clinically assessed disease severity. It has been shwn that patients hrax: first published as 1.113/thx n 1 December 199. Dwnladed frm n 23 April 21 by guest. Prtected by cpyright. 1234 Abbtt, Ddd, Webb and physicians perceive disease severity and verall self care differently. Frm the physician's viewpint patients underestimate the severity f the disease and verestimate self care. It is nt surprising, therefre, that clinical measures f disease severity r physicians' assessments are nt assciated with adherence t treatments and advice. Patient-perceived severity f illness has been shwn t predict adherence t penicillin and antihypertensive medicatin and t asthma and haemdialysis regimens.'415 When patients were asked their reasns fr pr adherence the mst cnsistent answers included busy time schedule and apathy and frgetfulness in additin t the cmmnly expressed beliefs I am nt as serius as thers with the disease and I feel well withut treatment . 1 he cncept f persnal cntrl has becme widely accepted as being an imprtant aspect f health care.' hree aspects f perceived cntrl have been defined: (1) internal lcus f cntrl (the extent t which individuals believe that they can determine their disease prgressin/utcme), (2) chance lcus f cntrl (the belief that factrs utside f a persn's cntrl such as luck, chance, r fate can influence their health), and (3) pwerful thers lcus f cntrl (the belief that ther peple such as dctrs, nurses, r family members can influence health utcme). Patients n renal dialysis wh believed that they had cntrl ver the management f their wn disease (internal lcus f cntrl) adhered t their treatment t a greater extent than thse wh believed that the curse f their disease was utside f their cntrl (external beliefs). Patients wh believed that health prfessinals were respnsible fr their health als reprted higher levels f adherence t treatment.'7 his study aimed t evaluate whether health beliefs r perceived cntrl influence adherence t treatments in adults with cystic fibrsis. In the cntext f the Health Belief Mdel the wrk assessed the relatinships between reprted adherence t treatments and (1) the patients' perceived disease severity cncerning their past, present and future health, (2) the extent t which they were cncerned r wrried abut having cystic fibrsis, and (3) perceived vulnerability fr recurrent infectins. he relatinship between reprted treatment adherence and the patients' perceptin f where (r with whm) the respnsibility and cntrl lay fr the management f their disease was als examined. Methds SUBJECS Sixty seven cnsecutive patients wh regularly attended the Manchester Adult Cystic Fibrsis Unit were invited t take part in the study. INERVIEW All patients tk part in the study whilst they were clinically stable. he patient was guided thrugh the questinnaires by a psychlgist. In rder t minimise the faking gd effect subjects were administered the questinnaires away frm hspital wards and clinics and cnfidentiality was assured. QUESIONNAIRES he Manchester Adult Cystic Fibrsis Cmpliance Questinnaire was develped t measure the rates f adherence t treatments and medical advice, the reasns fr nn-adherence, and the patients' perceptin f their level f cmpliance. hese preliminary data can be fund elsewhere. Fr the purpse f this study nly the rates f adherence t the fur treatments (physitherapy, pancreatic enzymes, vitamins, and exercise therapy) were incrprated int the analyses. he degree f reprted adherence with physitherapy was measured n a six pint scale ( I never d my physitherapy - t I d my physitherapy nce/ twice each day = 5). he extent f adherence with enzyme (and vitamin) treatment was measured n a fur pint scale ( I never take enzymes = t I always take enzymes as prescribed = 3). he type and frequency f exercise engaged in by each patient was assessed (independently by the physitherapist and the physician) as t whether the exercise cnstituted a beneficial level fr that particular patient. Five subscales frm the Health Perceptin Questinnaire' which are all cmpnents f the Health Belief Mdel were emplyed. hese were past, current, and future health, susceptibility t infectins, and wrry abut the disease. he Health Lcus f Cntrl Scale'9 is cmprised f three subscales which measure (1) the extent t which individuals perceive themselves t be in cntrl f their wn health, (2) the degree t which they believe their health is cntrlled by health prfessinals r family, and (3) the influence f chance factrs. SAISICAL ANALYSES he Statistical Package fr the Scial Sciences (SPSS fr Windws) was emplyed fr the data management and analyses. It wuld be unrealistic t expect patients t cmply with treatments abslutely, particularly with physitherapy. Our classificatin f adherence is therefre less rigid. he data were cllapsed t frm three adherence grups: (1) adherent ( I d my physitherapy nce/twice each day, I ccasinally miss my physitherapy , n = 31), (2) partially adherent ( I ften miss ne/tw days, I ften miss many days , n = 1), and (3) nn-adherent ( I never d my physitherapy, I nly d my physitherapy when ill , n = 19). Similarly, the enzyme and vitamin data were brken dwn int adherent ( I always take enzymes (n = 45)/vitamins (n = 27) as prescribed ), partially adherent ( I usually take enzymes (n = )/vitamins (n =9) as prescribed ), and nn-adherent grups ( I smetimes/never take enzymes (n = 7)/vitamins (n = 24) as prescribed ). hese data were analysed using analyses f variance and independent t tests. hrax: first published as 1.113/thx n 1 December 199. Dwnladed frm n 23 April 21 by guest. Prtected by cpyright. Health perceptins and treatment adherence in adults with cystic fibrsis 1235 able I Distributin f scres fr the Health Perceptin and Health Lcus f Cntrl (HLOC) subscales Subscale Mean SD Range Past health Current health Future health Susceptibility Wrry HLOC (internal) HLOC (chance) HLOC (pwerful thers) Fr exercise therapy patients were described as either adherent (exercising t a beneficial level, n = 44) r nn-adherent (nt exercising t a beneficial level, n = 11). Five patients were nt prescribed exercise therapy because f the severity f their disease. he independent t test was emplyed fr the cmparisn f Health Perceptin and Health Lcus f Cntrl subscale scres between the exercise grups. Pearsn crrelatins were perfrmed between percentage predicted frced expiratry vlume in ne secnd (FEV1) and scres n the psychmetric scales. Results Sixty patients (35 men) agreed t take part in the study and cnstituted apprximately half f the ttal number f patients wh attended the cystic fibrsis centre. he mean age f the sample was 2.9 years (range 1-44). he mean FEV, percentage predicted was 59.4% (range 1-13%) indicating a wide range f disease severity. All study ppulatin means and percentages were representative f the ttal ppulatin f the cystic fibrsis unit. he scres n bth the Health Perceptin and Health Lcus f Cntrl subscales were n A C Adherent Partially Nnadherent adherent Adherent Partially adherent reasnably nrmally distributed s mean values are presented thrughut the data analyses. he range f scres and mean values fr each subscale were similar t thse reprted in ther chrnic disease ppulatins (table 1).221 N significant crrelatins were bserved between FEV, percentage predicted r age and scres n the Health Perceptin and Health Lcus f Cntrl subscales, nr were there assciatins between percentage predicted FEVI, age, r sex and the level f reprted adherence t the fur treatment regimens. ADHERENCE AND PERCEIVED HEALH here were n differences between the adherence grups (adherent, partially adherent and nn-adherent) fr physitherapy, exercise, enzyme and vitamin taking with regard t scres n the perceived past, current, and future health scales r the susceptibility t illness scale. he amunt f wrrying abut the disease, hwever, discriminated patients n the basis f adherence. Patients wh reprted themselves adherent t their physitherapy wrried abut having cystic fibrsis t a greater extent than patients wh were nn-adherent (adherent= 13., nn-adherent = 7.5, difference=.3, 95% CI 1.4 t 5.9, p .2) r partially adherent with their physitherapy regimen (adherent = 13., partially adherent = 9., difference=4.2, 95% CI.2 t 4.4, p .5). hse adherent with their enzyme medicatin had higher levels f wrry than nn-adherent subjects (adherent= 14.5, nnadherent=.1, difference=.4, 95% CI 1.32 t 5., p .1). Patients wh were adherent r partially adherent with their vitamin regimen wrried mre abut their cystic fibrsis than C.) C.) ) 1 - B _ a r adherent adiy herenadherent Nnadherent Nnadherent Figure 1 Mean wrry scres fr the adherence grups t (A) physitherapy, (B) enzymes, (C) vitamins, and (D) exercise regimens. hrax: first published as 1.113/thx n 1 December 199. Dwnladed frm n 23 April 21 by guest. Prtected by cpyright. l123 1Abbtt, Ddd1, ll%'bb 4 A L _ Adherent Part adherent Nn-adherent 4 B 3 U 2 -j 1IJlIIJ C) U) u J I ~ ~ 4 3 C 2 1 IIern ~~~~~I I Internal Chance Pwerful thers Internal Chance Pwerful thers al) (9) -JI -i I 3 _ 1 Internal Chance Pwerful D thers Internal Chance Pwerful thers FigureL 2.\lItaLn HcLiltli Lcils l' (,ntn)l scl-s fior thle adlliceitrce gi'ips t) (A) phlisithcrap\', (B) tni \'im (,' vitamiins, anld (D)) execise rt(nniltn(is. Internal cn1trl inldiccates tie exte\ ttt zchlic/i patinelts perceivt thlitiiscc t l.v in, cnti-l f thtni cvfstic fibnaisis; tl' cthance scale reflects the degreet t zwhich patients belietzlc tlhlat chanc lftit rs sitcli Lisl tlt and Iluck influenit tll'iti liealtli; and/ithe pzverful thens scale n1icasnitics the extft' t /i/ tliv beclivz tll'i tislislasc I.s CM1,1(lledc bi, l'ciltlt prlet'5i(77a1ls and17'r fam1ilv!. thse wh were nn-adherent (adherent = 12.3, nn-adherent = 7.2, difference = 5.1, 95%/ CI 1.59 t.2, p .1). N difference between the exercise adherent and nn-adherent grups was fund regarding their level f wrry (adherent=11.1, nn-adherent=1.5, difference =., 95 4) CI 2.2 t 2.4) (fig 1). ADHERENCE AND PERCEIVED CONROL Scres n the internal lcus f cntrl scale were similar fr all patients regardless f their level f adherence t physitherapy r enzyme and vitamin medicatin. Similar patterns f results emerged fr bth the chance and pwerful thers scales. Patients adherent r partially adherent t their physitherapy believed that factrs utside f their cntrl and pwerful thers (health prfessinals/family members) were respnsible fr their health t a greater extent than patients nn-adherent with their physitherapy (chance, adherent=2.7, nnadherent= 1., difference =9.9, 95(X CI 1.47 t 12.12, p .1; pwerful thers, adherent= 27., nn-adherent= 19.4, difference=.2, 95% CI 1.17 t 9.13, p .1; chance, partially adherent=25.1, nn-adherent= 1., difference=.3, 95%) CI.47 t 9.53, p .3; pwerful thers, partially adherent= 25.9, nnadherent= 19.4, difference=.5, 95%S CI.1 t 7.73, p .5). Patients adherent with their enzyme medicatin scred higher n the chance scale than thse wh were partially adherent r nn-adherent (adherent = 3., partially adherent = 23.7, difference =.3, 95% CI 1.2 t 9.22, p .1; adherent= 3., nn-adherent= 1.7, difference= 11.3, 95'S, CI 1.3 t 14.75, p .1). Adherent and partially adherent patients believed that thers cntrlled their health t a greater extent than thse wh were nn-adherent (adherent= 2.5, nn-adherent= 19.1, difference 9.4, 95% CI 1.3 t 11.3, p o.oo1; partially adherent =25.1, nn-adherent 19.1, difference =., 95'/) CI.4 t.9, p .5). hse patients adherent with their vitamin regimen believed that chance factrs and pwerful thers influenced their cystic fibrsis t a greater degree than nn-adherent r partially adherent patients (chance, adherent 2.2, nn-adherent= 2.3, difference=7.9, 95'S, CI 1.53 t 1., p .2; pwerful thers, adherent =29., nn-adherent =1.9, difference =1.9, 95 O CI 2.17 t 14.29, p .1; pwerful thers, partially adherent=24.2, nn-adherent=1.9, difference= 5.3, 95'.VO CI.33 t.71, p .5). In cntrast, patients wh were adherent with exercise therapy believed that they were in cntrl f their wn health t a greater extent than nn-adherent patients (adherent= 29.4, nn-adherent= 2.7, difference=.7, 95(l CI 1.59 t 12.55, p .3) (fig 2). Discussin he Health Belief Mdel was nly partially supprted by the findings f this study. heretically, the relatinship between perceived severity and adherence shuld be a psitive ne, but n difference emerged between the adherence grups (reprted level f adherence) regarding perceived past, present r future hrax: first published as 1.113/thx n 1 December 199. Dwnladed frm n 23 April 21 by guest. Prtected by cpyright. Health perceptins and treatment adherence in adults with cystic fibrsis health. In cntrast, ther researchers have fund that perceived severity f illness predicts reprted treatment adherence.'4 15 Fr life threatening diseases r cnditins with a shrtened life expectancy the relatinship between perceived severity and adherence may be mre cmplex than the simplistic psitive linear assciatin assumed by the Health Belief Mdel. If the level f perceived severity becmes t great sme individuals may avid perceptins and behaviurs which cmpel them t acknwledge the seriusness f the situatin. his ntin is supprted by previus wrk which demnstrated that patients with the mst serius cystic fibrsis (FEV, 4% predicted) reprted their health t be abve/well abve average cmpared with thers with cystic fibrsis even thugh they had been assessed fr and were awaiting heart-lung transplantatin. Similarly, in vluntary screening fr ay-sachs disease and tuberculsis thse patients wh perceived the seriusness f the disease t be extremely high refused radigraphic screening.2223 Fr many patients avidance r denial may be an adaptive way f cping with cystic fibrsis. here is evidence that these cping strategies have a prtective effect fr individuals n crnary care units24 but their value remains t be evaluated as a way f cping with cystic fibrsis. Cnversely, minimising the seriusness f the disease may becme harmful if it diminishes adherence t treatment regimens. he Health Belief Mdel assumes that perceived susceptibility t recurrent ill health wuld be assciated with greater adherence but ur results d nt lend supprt t this assumptin. Subsequently it has been hypthesised that perceived disease severity/susceptibility may be related t adherence in an inverted U shaped maner, adherence being lw when severity is perceived as either lw r high and greatest when severity is seen as mderate. It is pssible that, althugh individuals may acknwledge the seriusness f their disease and their vulnerability t recurrent health prblems, this is nt sufficient t influence adherence t treatments. his wrk has clearly demnstrated that nly if they are cncerned/wrried abut their cystic fibrsis will they be mtivated t fllw their treatment regimens apprpriately. hse patients wh reprted high levels f wrry abut their cnditin adhered t their physitherapy, enzyme, and vitamin therapies t a greater extent than thse patients wh were nt unduly cncerned abut their disease. Similar findings have emerged frm a study regarding breast selfexaminatin. Perceived susceptibility t breast cancer r perceived dis
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