Diabetes Spectrum

Volume 13 Number , 2000, Page 21

From Research to Practice/Diabetes and Quality o !i e

Diabetes and Quality o !i e

Richard R. Rubin, PhD, CDE

Preface
Diabetes is a demanding disease. As my son, who has had diabetes for more than 20 years, once told me, "At least once every ! minutes, " have to deal with my diabetes. " have to sto# what "$m doin%, thin& about how "$m feelin%, try to remember when and what " last ate, thin& about what "$ll be doin% ne't, and decide whether to test my blood. (hen, de#endin% on the results of the test )or my %uess as to my su%ar level*, "$ll #lan when to eat or ta&e my ne't insulin bolus." Can anythin% so ubi+uitous as diabetes and its mana%ement not affect a #erson$s +uality of life, a #erson$s ability to function and to derive satisfaction from doin% so, -aturally, the life of every #erson with diabetes is uni+ue. -ot many of our #atients mana%e their diabetes as actively or effectively as my son does. .ut almost every #erson with diabetes " have ever met feels that diabetes #owerfully affects their lives, and most feel burdened by the manifold demands of their disease. " call this e'#erience "diabetes overwhelmus," since so many #eo#le feel overwhelmed by the continuous burden of their disease and its mana%ement. (hese emotional and social burdens may be com#ounded by the acute #hysical distress of hy#o%lycemia or hy#er%lycemia and by the chronic #hysical distress of diabetes/related com#lications. What is quality of life? 0o it seems clear that diabetes can affect a #erson$s +uality of life. .ut what is +uality of life, 0everal articles in this 1rom Research to Practice section raise this +uestion. (he authors of these articles caution us to thin& clearly about what is bein% measured when various researchers say they are studyin% +uality of life. "n the most %eneral terms, +uality of life may be thou%ht of as a multidimensional construct incor#oratin% an individual$s sub2ective #erce#tion of #hysical, emotional, and social well/bein%, includin% both a co%nitive com#onent )satisfaction* and an emotional com#onent )ha##iness.* 3ealth/related +uality of life and diabetes/s#ecific +uality of life re#resent increasin%ly narrower conce#ts. As 4illiam Polons&y #oints out )#. 56, 7nderstandin% and Assessin% Diabetes/ 0#ecific 8ualilty of 9ife*, there is currently no "%old standard" for the assessment of overall, health/related, or diabetes/s#ecific +uality of life. :et our efforts to develo# such %old standards should continue unabated. As 1ran& 0noe& states in his article )#. 2;, 8uality of 9ife< A Closer 9oo& at =easurin% Patients$ 4ell/.ein%*, "(he develo#ment of valid, reliable, user/friendly +uality of life assessment #rocedures can hel# facilitate the inte%ration of +uality of life

measurement into diabetes care." "n her article )#. 2>, 8uality/of/9ife Assessment in Diabetes Research< "nter#retin% the =a%nitude and =eanin% of (reatmen Effects*, =arcia (esta discusses the uses of +uality/of/life assessment in diabetes care and the inter#retation of treatment effects on +uality of life. Why is quality of life important in diabetes? 8uality of life has im#ortance for #eo#le with diabetes and their health care #roviders for several reasons. 1irst, many #eo#le tell me that when they suffer from diabetes overwhelmus )i.e., #oor +uality of life*, they often ta&e a "to hell with it?" attitude toward their self/care, doin% less than they should to mana%e their diabetes. 7nfortunately, as one of my #atients said, "4hen you ta&e a to/hell/with/it attitude toward your diabetes, that$s strai%ht where you %o." Diabetes overwhelmus leads to diminished self/care, which in turn leads to worsened %lycemic control, increased ris&s for com#lications, and e'acerbation of diabetes overwhelmus in both the short run and the lon% run. (hus, +uality/of/ life issues are crucially im#ortant, because they may #owerfully #redict an individual$s ca#acity to mana%e his disease and maintain lon%/term health and well/bein%. As Alan Delamater #oints out in his article )#. ;2, 8uality of 9ife in :ouths with Diabetes*, these issues are es#ecially critical for children and adolescents, who will #robably s#end many years livin% with diabetes. (here is now %ood evidence that, amon% #eo#le with diabetes, #sychosocial factors such as de#ression are stron%er #redictors of medical outcomes such as hos#itali@ation and death than are #hysical and metabolic factors such as #resence of com#lications, body mass inde', or 3bA c level. 8uality of life is also increasin%ly reco%ni@ed as an im#ortant health outcome in its own ri%ht, re#resentin% the ultimate %oal of all health interventions. =ore than !0 years a%o, the 4orld 3ealth Ar%ani@ation stated that health was defined not only by the absence of disease and infirmity, but also by the #resence of #hysical, mental, and social well/bein%.2 (hou%h health care #roviders sometimes focus on medical outcomes alone when assessin% the efficacy of their interventions, any #erson with diabetes will tell you that these outcomes are truly meanin%ful only to the e'tent that they affect #hysical, emotional, and social well/bein%//that is, +uality of life. Dr. Polons&y s#ea&s to this issue in his article. Recent develo#ments in the fields of health outcomes research and health technolo%y assessment have also stimulated interest in +uality/of/life evaluation as a clinical research tool. =ana%ed care or%ani@ations want to &now whether the costs associated with various interventions are 2ustified, often within fairly brief time frames. As a result, researchers and health #lan administrators are focusin% on relatively short/term #atient outcomes, often includin% functional health status, satisfaction with health care, and overall +uality of life. " see the %rowin% interest in health/related +uality of life in %eneral and diabetes/related +uality of life in #articular as a #ositive trend. (his trend reflects a dee#er understandin% and a##reciation of the crucial role of behavioral and #sychosocial factors in the lives of our #atients.5,; 4e all reco%ni@e that diabetes can affect our #atients$ +uality of life, and that #erceived +uality of life can #owerfully affect a #erson$s commitment to active diabetes self/ mana%ement. Aur %rowin% awareness of the im#ortance of +uality of life in diabetes has led researchers to as& a broad ran%e of +uestions concernin% their interrelationshi#s. (his 1rom

Research to Practice section re#resents an effort to raise and address some of the most interestin% of these +uestions. Quality of life and diabetes: key findings. .efore you %o on to the articles that follow this #reface, " would li&e to note some &ey results of a com#rehensive literature review on +uality of life and diabetes that " recently #ublished with =ar& Peyrot.! 1. Does diabetes affect quality of life? =ost studies re#ort worse +uality of life for #eo#le with diabetes com#ared to the %eneral #o#ulation, es#ecially re%ardin% #hysical functionin% and well/bein%. 4hen the com#arison %rou# is #eo#le with other chronic diseases, the #icture is less clear, with relative +uality of life varyin% by +uality of life domain and the medical condition with which diabetes is bein% com#ared. Peo#le with ty#e diabetes %enerally re#ort better #hysical functionin% and more ener%y than those with ty#e 2 diabetes, thou%h these differences are #robably the result of factors that are associated with diabetes ty#e, such as a%e or even treatment re%imen. (his reminds us of the fre+uently com#le' inter#lay amon% factors that influence +uality of life. 1or those with ty#e 2 diabetes, treatment intensification from diet alone to oral a%ents to insulin does seem to be associated with reduced +uality of life. 1or #eo#le with ty#e diabetes, some studies, includin% those conducted as #art of the Diabetes Control and Com#lications (rial, indicate that treatment intensification has no effect on +uality of life. Ather wor& su%%ests that intensification may enhance +uality of life by reducin% the immediate and chronic effects of hy#er%lycemia. 0till other studies su%%est that the relationshi# between treatment intensity and +uality of life may be curvilinear for #eo#le who have ty#e diabetes, since very intensive re%imens may reduce +uality of life throu%h hi%hly demandin% self/care re%imens and increased incidence of hy#o%lycemia. 2. Is glycemic control related to quality of life? 0ome studies re#ort a #ositive association between hi%h levels of #erceived +uality of life and %ood %lycemic control, es#ecially when +uality of life is assessed by disease/s#ecific measures that ca#ture relevant sym#toms and feelin%s, and as lon% as %ood control is not accom#anied by si%nificant increases in treatment burden or hy#o%lycemia. Dr. 0noe& discusses the relationshi# between sym#toms and +uality of life in his article, where he offers e'#lanations for the inconsistent association between %lycemic control and +uality of life re#orted in the literature. 3. Are demographic variables or psychosocial factors related to quality of life? 0ome demo%ra#hic variables are associated with +uality of life in #eo#le with diabetes, 2ust as they are in the %eneral #o#ulation<

=en %enerally re#ort better +uality of life than women. :oun%er #eo#le %enerally re#ort better +uality of life than older #eo#le. (hose with more education or income %enerally re#ort better +uality of life than those with less of either.

0ome #sychosocial factors, includin% health/related beliefs, social su##ort, co#in% style, and #ersonality ty#e may have a #otent effect on +uality of life. (hese effects may be direct, or they may be indirect, bufferin% the ne%ative im#act of diabetes or its demands. "n fact, these #sychosocial factors may be the most #owerful #redictors of +uality of life, often outwei%hin% the effects of im#ortant disease/related factors, such as com#lications.6/ 0 . !an quality of life in people "ith diabetes be improved? 1inally, the literature contains evidence that certain interventions, includin% the introduction of blood %lucose/lowerin% medications or new insulin delivery systems, and educational and counselin% interventions desi%ned to facilitate the develo#ment of diabetes/s#ecific co#in% s&ills, can im#rove both %lycemic control and +uality of life in #eo#le with diabetes. A'el 3irsch discusses this issue in his editorial in this issue )#. 5, Editorial< Diabetes Care in Bermany< -ew Roles for Professionals and Patients*. The future of quality of life and diabetes in research and care. " believe +uality/of/life research in diabetes will be%in to reali@e its #otential when we can desi%n, im#lement, and evaluate interventions that influence factors that affect +uality of life. Amon% these factors, co#in% s&ills may be the critical one. "t a##ears that active and effective disease/s#ecific co#in% can tri%%er a #ositive cascade of enhanced well/bein%, more active diabetes self/mana%ement, better %lycemic control, and fewer com#lications. (his su%%ests that #eo#le with diabetes who are not active or effective co#ers may benefit from interventions desi%ned to enhance their co#in% s&ills. 9orraine 0chafer discusses the im#ortance of individual co#in% resources in this issue$s 9ifestyle and .ehavior de#artment. =ar& Peyrot, Christo#her 0aude&, and " re#orted on the results of a !/day out#atient education #ro%ram that incor#orated co#in% s&ills trainin% interventions desi%ned to im#rove some as#ects of +uality of life. (his intervention si%nificantly im#roved diabetes self/efficacy and emotional well/bein% )de#ression and an'iety* at follow/u#, 6 months after the intervention was com#leted. "nterventions such as this hold #romise for im#rovin% a broad ran%e of outcomes for #eo#le with diabetes.

#eferences Rosenthal =C, 1a2ardo =, Bilmore 0, =orley CE, -abiloff .D< 3os#itali@ation and mortality of diabetes in older adults< a three/year #ros#ective study. Diabetes Care 2 <25 /5!, >>D.
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Constitution of the 4orld 3ealth Ar%ani@ation. "n World Health Organization: Handbook of Basic Documents. !th ed. Beneva, Palais des -ations, >!2, #. 5/20.
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Blas%ow RE, 1isher E., Anderson .C, 9aBreca A, =arrero D, Cohnson 0., Rubin RR, Co' DC< .ehavioral science and diabetes< contributions and o##ortunities. Diabetes Care 22<D52/;5, >>>.
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Blas%ow RE, Asteen E9< Evaluatin% diabetes education< are we measurin% the most im#ortant outcomes, Diabetes Care !< ;25/52, >>2.

Rubin RR, Peyrot =< 8uality of life and diabetes. Diabetes Metab Res Rev !<20!/ D, >>>. Peyrot =, Rubin RR< Persistence of de#ression in diabetic adults. Diabetes Care 22<;;D/!2, >>>.

Peyrot =, Rubin RR< 9evels and ris&s of de#ression and an'iety sym#tomatolo%y amon% diabetic adults. Diabetes Care 20<!D!/>0, >>F.
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Rose =, .ur&ert 7, 0choller B, 0chiro# (, Dan@er B, Gla## .1< Determinants of +uality of life of #atients with diabetes under intensified insulin thera#y. Diabetes Care 2 < DF6/D5, >>D.
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Does van der 1EE, -eelin% de -CD, 0noe& 1C, Gostense PC, .outer 9=, 3eine RC< 0ym#toms and well/bein% in relation to %lycemic control. Diabetes Care ><20;/ 0, >>6. Does van der 1EE, -eelin% de -CD, 0noe& 1C, Brootenhuis PA, Gostense PC, .outer 9=, 3eine RC< Randomi@ed study of two different tar%et levels of %lycemic control within the acce#table ran%e in ty#e 2 diabetes. Diabetes Care 2 <20D!/>5, >>D. Rubin RR, Peyrot =, 0aude& C0< (he effect of a diabetes education #ro%ram incor#oratin% co#in% s&ills trainin% on emotional well/bein% and diabetes self/efficacy. Diabetes duc ><2 0/ ;, >>5.
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