S C H O L A R L Y P A P E R C h r o n ic Il l n e s s a n d Q u a l i t y o f L ife A B S T R A C T : The m ajor objective o f medical care is to preserve life. I f patients cannot be cured and are left with residual chronic diseases then the aim is to provide them with the means to lead a life o f q uality w ithin the confines o f th eir disease. R e h a b ili­ tation in chronic disease means restoring or creating a life o f acceptable quality. This is achieved by restoring the patient to optimal physiological and psychological health compatible with the extent o f the disease and in doing so improve the quality o f life. Improved quality o f life is the best indicator o f successful rehabilitation. Patients with chronic diseases are increasingly expected to become partners when decisions are made regarding their therapy and therefor their evaluation o f the outcome is o f great importance. There are a num ber o f shortcomings with quality o f life evaluations and the most important one is that it does not seem to be adequately defined. Another m ajor problem is that this evaluation usually focuses on aspects o f physical function and fe w studies include subjective indicators. It is generally f e lt that the opin­ ion o f the spouse or caregiver should be included. KEYWORDS: Q U ALITY OF LIFE, REHABILITATION OUTCOME, CH RONIC ILLNESS, M EASU RING H EALTH EALES C.T; STEWART AV2; NOAKES TD3 1 D epartm ent o f Physiotherapy, University of the W itw atersrand. 2 D epartm ent o f Physiotherapy, University of the W itw atersrand. 3 D isco very Health C h a ir of Exercise a n d Sports Science, Division o f H um an Biology, University o f C a p e Town an d Sports Science Institute o f South A frica , N ew la n d s, C ap e. The m ajor objective o f medical care is to preserve life and to assure its optim al quality. M edical and surgical interventions have becom e so advanced th at m o rtality rates have decreased significantly and frequently this results in a grow ing num ber o f patients who m ust live with chronic illnesses. As there is no cure for a chronic illness, these patients experience a sense o f h o p e le ssn e ss an d lo se c o n fid e n c e (Sm ith and N icassio, 1995). In addition depression, disrupted marital and family relationships and decreased ability to w ork are com m only seen in patients with chronic disease (Kaplan et al, 1987; Sm ith and N icassio , 1995). T he patient’s self-perception is affected by changes in the body and the functional perform ance o f the body. Persistence o f m edical sym ptom s leads the patient to the realisation that the medical treatm ent is lim ited and as a result medical advice is not accepted with m uch assurance. CORRESPONDENCE: Eales CJ D epartm ent o f Physiotherapy Wits M edical School 7 York Road Parktown 2193 Tel: (011 )4 8 8 -3 4 5 0 Fax: (O il) 488-3210 Email: 159eales@ chiron.wits.ac.za Clinical status has to be set against the background o f life and o f functioning at hom e or at work. The know ledge o f chronic suffering is much less widespread than the know ledge o f acute disease and the result is that the patient’s real plight is not fully appreciated, nor understood (W HO, 1980). For these reasons it is im portant to determ ine patients’ ju d g e­ m ent o f the medical treatm ent and the resultant outcome. With people living longer, the popu­ lation is increasing and m ore people are exposed to the developm ent o f chronic diseases (Jette, 1993)'. Chronic disease has superseded acute disease as the m ajor medical problem (Fries, 1980). The practical focus on health im prove­ ment over the next decades will be on chronic instead o f acute disease, on m orbidity and not mortality, on quality o f life rather than on duration o f life, and on postponem ent rather than on cure. B ecause o f the com plex nature o f major diseases, attention is draw n to the fac­ tors that influence outcom es, particularly social and psychological outcom es. O ut­ come is related to choice, assumption o f personal responsibility, and education for m aking decisions about personal health and self-care. Patients should be encour­ aged to, rather than discouraged from, exercising their personal choice. However returning responsibility to the patient may not be easy to achieve and may cause the patient distress (Fries, 1980). H ealth education and preventive m edicine can effectively low er the inci­ dence o f age-specific chronic disease (Rabbit, 1992) and these two factors shou ld d em an d the atten tio n o f all health care workers. The risk factors for poor health status need to be identified so that health care workers can modify them in order to prom ote better patient outcom es. REHABILITATION Rehabilitation is defined in the Oxford D ictionary (1992) as: “The process o f restoring the individual to effectiveness or normal life by training after illness” . This discussion focuses on patients with chronic cardiac disease and rehabili­ tation is regarded in the broad sense along the lines suggested by the W HO. It includes the total medical care o f patients from the tim e they present for m edical care until their final discharge. The W H O defines cardiac rehabilitation as the “sum o f activity required to ensure patients the best possible physical, m en­ tal and social conditions so that they may regain as norm al as possible a place in the com m unity and lead an active and productive life” (W HO, 1964). R eh ab ilitatio n in ch ro n ic disease means restoring or creating a life o f 10 SA J o u r n a l o f P h y s io th e ra p y 2000 V o l 56 No 4 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 3. ) mailto:159eales@chiron.wits.ac.za accep tab le quality fo r p atients who suffer from chronic diseases. R ehabili­ tation should not be done “to” people but “w ith” them. Rehabilitation is an area in which the natural sciences, behavioral scien ces and social sciences m eet (W HO 1964). In patients with cardio­ vascu lar diseases, the W H O E xpert Com m ittee on Rehabilitation o f Patients with C ardiovascular Diseases was in agreem ent that every thing possible must be done to rehabilitate such patients in order to restore them to as normal a life as possible in the society in w hich they live. These patients should be granted the dignity and the right to security in the same way that it is granted to normal individuals and individuals with other m ajor disabilities. Gordon and Gibbons (1991) stated that “cardiac rehabilitation program s are designed to restore a patient to optimal physiological and psychological health compatible with the extent o f the patient’s heart p ro b lem ” . T he reh ab ilitativ e approach should begin at the onset of illness and remain a continuing feature in the long-term care o f the patient; how ­ ever, “the initiation and co-ordination of rehabilitation efforts m ust be the respon­ sibility o f the patient’s prim ary physi­ cian...’’(W enger and Hellerstein, 1992). Therapy for patients with chronic disease is designed to lim it the disabling consequences o f the illness. Quality o f life encom passes the ways in w hich the patient’s life is affected by the illness and by the “com ponents o f its care” (Spitzer, 1987). The clinical effective­ ness o f rehabilitation in chronic diseases, according to Oldridge et al (1991), needs to be judged not only in terms o f m or­ tality and m orbidity but also in terms o f health-related quality o f life. R esearch on the quality o f life in the field o f rehabilitation has becom e increasingly popular (Fabian, 1991). The m easu rem en t o f outcom e o f treatm ent for the patient is the keystone o f m odem medicine, and its importance is being recognised throughout clinical practice. This is especially the case when costly invasive treatm ents are involved. S urvival figures, clinical judgem ent o f outcome, return to work and test results have been the prevalent m ethods o f assessing outcom e. The main reason for their use may be that they are easier to m easure (Caine et al, 1991). For instance it could be that return to w ork is more closely related to personality type and that the patient may want to work, but if the financial cir­ cum stances o f the patient perm itted, then not to return to w ork may in fact have im proved the patient’s quality o f life to a greater extent. There has been a change o f em phasis in the assessm ent o f patients with chronic disease recently and the trend is m ore towards assessing outcom e in terms o f patients’ percep­ tions o f changes in their state o f health over a period o f time. REHABILITATION AND QUALITY OF LIFE The traditional and accepted definition o f rehabilitation is that it is the reduction o f disability and handicap w ith or w ith­ out a change in the underlying im pair­ ment. These changes are not unrelated to the individuals in w hom they occur although not m uch attention has been given to the reaction o f the patient to them. The effects o f the disease process can never be partitioned betw een body and mind (W HO, 1980). Rehabilitation means a goal directed and tim e limited process aimed at enabling an im paired person to reach an optim um mental, physical and/or social functional level, thus providing him or her with the tools to change his or her own life. It can involve measures to com pensate for a loss o f function or a functional limitation (for exam ple technical aids) and other m easures intended to facilitate social ad ju stm en t or read ju stm en t (U nited N ations, 1983). F or the purpose o f this paper, patients with cardiac disease will be considered as exam ples o f patients w ith chronic disease. In patients with cardiac disease, the reduction o f disability and .handicap are considered m ore appropriate deter­ m inants o f outcom e than is a reduction in m ortality or morbidity. There is also consensus that criteria such as function in daily life, productivity, em otional stability and life satisfaction can be con­ sidered as indicative o f the im proved quality o f life o f the patient (W enger et al, 1984). In coronary artery disease the im pairm ent is coronary atherosclerosis, the disability is the presence o f angina and the handicap is the inability to function norm ally in the community. T he presence o f these factors leads to a poor quality o f life (Oldridge, 1986). A com m on interpretation o f rehabilita­ tion for patients with cardiac disease is that they should be “restored and m ain­ tained” at optimal clinical, social, voca­ tional and psychological status. This implies that all this would be done for the patient, possibly by a health profes­ sional, and that the role o f the patient would be passive. The definition o f the W HO is slightly different and im plies that the patient should assum e some responsibility for their rehabilitation in the process o f regaining as normal as possible a place in the community (W HO, 1964). Perhaps health care workers need to look at their perspectives on rehabilitation and con­ sider five im portant conceptual changes that are suggested by Sartorius (1992). The first concept is the im provem ent o f overall quality o f life as perceived by the patient as well as the patient’s family. Secondly, if the quality o f life is to becom e a criterion for assessing im proved rehabilitation, the opinion of those whose life is being changed must becom e a decisive factor, rather than using this as an interesting point o f observation. A third important point is that people are different and so are impaired people, and rehabilitation workers should be tolerant to these differences. The outcom e o f rehabilitation should not be judged by the patient’s ability to abide by rigid, predeterm ined rales o f “nor­ m al” behaviour. B eing able to find a job is still considered confirm ation o f a patient’s worth with the result that acti­ vities such as help and support to others, the upbringing o f children and creative art, are given m uch less attention and respect than the ability to function in a traditional job. Fourthly it m ust be borne in mind that people and im pairm ents change over time. T hese changes, as well as the changes in the world in w hich patients live, should be respected. It has to be appreciated that rehabilitation is a long- lasting process and people m ust be accom m odated as they m ove forward in this process. Rules and judgem ents will have to keep changing while all are SA J o u r n a l o f P h y s io th e ra p y 2000 V o l 56 No 4 11 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 3. ) moving forw ard in tim e. Fifthly, as we com e to understand m ore fully that rehabilitation is an intervention to im prove the quality o f life, so it becomes important to appreciate that there is not a strict distinction between services dealing in rehabilitation and those that aim to help people in other ways. This connection does not only imply the differences between health and reh ab ilitatio n services b ut also between these services and other com ­ m unity services. T he resu lt w ill be unity o f purpose and aim and a higher priority for rehabilitation. Improving the p atien t’s quality o f life will include certain factors that are im portant to all of us and certain factors that are im portant specifically to the patient (Cohen, 1982). QUALITY OF LIFE AS A HEALTH CARE ISSUE T he aim o f m edical in tervention is p rim arily to m aintain life. How ever, through the ages, health care workers have alw ays sought m uch more for their patients than merely a prolongation of life. If the “good life” o f the patient is the aim o f the medical team, it is essen­ tial that not only should the prolongation o f life be considered but in addition, the quality o f that life. Philosophers as far back as Socrates have em phasised this point. It was Socrates who said in an A thenian court that he feared some things more than death and that it was not m erely the possession of life itself, but the quality o f that life, that counts m ost (Cohen, 1982). Therefor the major objective o f medical care is to preserve life and to assure its optimal quality. An argum ent has been put forward that a hum an person is a life lived according to a human plan (Royce, 1908). D iseases are not always fatal but the p a tie n t’s co m fo rt and h ap piness is affected by them and as a result a patient can no longer lead life according to his/her plan (M osteller et al, 1980) and thus the quality o f life o f the patient is affected. The objectives o f the rehabili­ tation team should be to assist the patient in reform ulating their life-plan in order to lead a life with some quality. In the final outcom e the quality of life of the patient may be affected. For this reason it becom es im portant to assess the p atient’s judgem ent o f the m edical treatm ent and the resultant outcome. Chronic diseases o f the later years are often responsible for most prem ature deaths (Fries, 1980). Q uality o f life measures are im portant to determ ine the im pact o f chronic diseases on patients’ lives (G uyatt et al, 1993). The challenge o f ascertaining quality o f life as an outcom e o f rehabilitative care lies in the assum ption that the bulk o f medical and surgical treatment is not life saving but on the contrary aim ed at improving the state or quality of life. Patients are increasingly expected to becom e partners when decisions are made regarding their therapy. In order for them to make inform ed decisions, infor­ mation on how treatment will affect their lives, is im portant (Kinney et al, 1996). To determ ine w hether an intervention has been successful it is essential that the im provem ent of the medical status of the patient as well as the patient’s perception o f this outcome be considered, in other words the quality o f life o f the patient must be assessed. M oving away from an em phasis on mortality, health researchers are now focusing m ore on the causes and conse­ quences o f disability. The evaluation of the quality o f life provides m uch greater understanding of the im pact and treat­ m ent o f the illness than traditional out­ com e measures (Ferrans, 1990). DEFINING QUALITY OF LIFE O ne o f the m ajor problem s with quality of life research is that there is no univer-' sal definition o f quality o f life. Failure to define quality o f life has been identified as a m ajor w eakness in m any studies (Kinney et al, 1996). It has been reported that in only 15% o f the literature the concept “quality o f life” was actually d efin ed (G ill and F ein stein , 1994). W ithout defining quality o f life there is no blueprint for the m easurem ents taken to support the definition. Knapp and M cClure (1978) regard quality o f life as a m ultidim ensional concept that can be viewed as a transaction betw een indivi­ duals and their social and physical envi­ ronm ent. P erso n ality traits such as “expectancy o f success” , adaptability and com petence are some o f the indivi­ dual differences observed in patients’ attem pts to m aster their environm ent. Q uality o f life is a dynam ic construct and one should bear in mind that attitudes are not constant and are continually m odified by phenom ena such as adapta­ tion, coping and self-control. Individuals also change the standards by which they assess quality o f life during a prolonged disease process and this can becom e an im portant factor when measuring out­ com e (Allison et al, 1997). A nalysis o f the literature resulted in identifying two im portant factors affecting an individual’s quality o f life. T hese two factors are the health o f the patient and the ability to achieve and m aintain m axim al functional inde­ pendence and autonom y (King et al, 1992; W illiam s, 1994). Lam endola and Pelligrini (1979) described quality of life as a com plex concept used by patients to subjectively assess the desirability of a particular way of life. The quality o f that w ay o f life is the satisfaction it provides the individual (Ferrans and Powers, 1992). A ccording to Flanagan (1982) health and subjective well being are o f central im portance in the assessm ent o f quality o f life. Health includes the objective evaluation o f disease and the patient’s p ercep tio n o f sym ptom s. S u bjective well being includes measures such as the p atient’s assessm ent o f life in terms o f happiness, life satisfaction and posi­ tive effects. Health has been reported as the m ost im portant aspect of happiness (Cam pbell, 1970). Palm ore and Luikart (1972) stated that self-rated health was the predom i­ nant variable to influence life satisfac­ tion. However, it is im portant to note that the relationship between satisfaction w ith health and w ell being is only m oderate. It seems that the influence of health on well being does not merely reflect how people feel physically, but to som e extent w hat their health allows them to do in term s o f functional capa­ city. N ote has to be taken o f the sugges­ tions by W iklund et al (1987) that sub­ jectiv e m easures of health are more strongly related to happiness (satisfac­ tion) and that objective measures have only a lim ited relationship to subjective assessm ents. It is therefore essential to include both kinds of indicators when m easuring health. 12 SA J o u r n a l o f P h y s io th e ra p y 2000 V o l 56 No 4 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 3. ) Happiness is associated with the good life. H appiness for A ristotle stem m ed from virtuous activ ity o f the soul throughout a com plete life, with external goods adding luster to it (A ristotle: Ethica nicom achea, 1947). Happiness and satisfaction are not synonym s and behave differently across the life span o f the general population. Happiness decreases with age whereas satisfaction increases. Happiness suggests short-term positive feelings whereas satisfaction implies longer-term cognitive experience resulting from a judgem ent o f life’s conditions (Patrick and Erickson, 1993). C am pbell (1993) states that there is no doubt that happiness and satisfaction have som ething in com m on but there is also a difference. Satisfaction in his view involves an act o f judgem ent, whereas happiness is characterised by a spon­ taneous “lift-o f-th e-sp irits” . F o r this reason it is argued that satisfaction com es closer to capturing the concept of q u ality o f life than does happiness (Ferrans, 1990). Along with life satisfac­ tion and happiness as indicators o f psychological well-being, perceptions of physical w ell-being are also important, particularly when assessing quality of life o f individuals who have experienced disruption in their physical health status (Packa, 1989; King et al, 1992). A sim ple but astute definition o f qua­ lity o f life is offered by Ory et al (1994). T hey define quality o f life as a “m ulti­ dim ensional concept that refers to an individual’s overall life satisfaction and total w ell-being” . They go on to say that the m ost im portant factors that affect the patient’s quality o f life are the patient’s health and ability to function. The aim o f m edical intervention should be to obtain optim al function and to decrease disability and thereby increase health- related quality o f life. Q uality o f life has becom e an increasingly im portant m easure to assess the im pact o f disease and the outcom e o f treatm ent on indi­ viduals and their families. The domains (areas, fields) commonly thought to com prise health-related qua­ lity o f life and considered im portant by Ory et al (1994) are: physical health, fu n ctio n al ability, em otional health (depression, anger, anxiety and per­ ceived stress), sexual functioning, work productivity, social perform ance and life satisfaction. ̂ j Q uality o f life is a particularly rele­ vant outcom e in cardiac rehabilitation in that it also reflects the p atient’s per­ sonal value system, life satisfaction and judgem ents on perceived health status. Perceived health status in turn has been dem onstrated to correlate better with m ortality risk than m any other objective measures (Kaplan and Cam acho, 1983). Health is one o f the inost im portant com ponents o f quality o f life (Cleary et al, 1991). The term “health-related qua­ lity o f life “ refers to physical, psycho­ logical and social dom ains o f health, seen as distinct areas that are influenced by a person’s experiences, beliefs, expec­ tations and perceptions. Each o f these dom ains can be m ea­ sured in two dim ensions: 1) objective assessm ents o f functioning or health status and 2) subjective perceptions of health. A lthough the objective dim en­ sion is im portant in defining a p atient’s degree o f health, the p atient’s subjective perceptions and experiences translate the o b jective assessm en t into the actual quality o f life experienced. W hen a patient becom es ill alm ost all aspects o f life becom e health related (G uyatt et al, 1986). The patient’s own value system is im portant in assessing quality o f life. There is grow ing consensus that the individual him self is the only proper ju d g e o f his/her quality o f life (G uyatt et al, 1986; Ferrans, 1990; Denollet, 1994) and it has been postulated that self-rated health is the predom inant variable to influence satisfaction with life in m id­ dle age (Palm ore and Luikart, 1972). Quality o f life is a reflection o f the way a person feels and functions ( G uyatt et al, 1986). Clinicians tend to overestimate the role o f life skills and to underesti­ mate the role o f social needs. The term “quality” simply im plies an evaluation or subjective rating by the individual. The subjective ratings, can be o f life in general or various com ponents o f life such as social life, financial situation or w ork (S tew art and K ing, 1994). Subjective states are difficult to m easure and thus investigators tend to bypass personal evaluations and infer quality o f life through know ledge o f aspects of the individual’s behaviour that can be observed and m easured. Presum ing subjective quality o f life or well being, from external circum ­ stances does not fully take into account the values, needs and adaptability o f individuals to various life situations (Flanagan, 1982). The spouse’s evaluation in the assess­ m ent of the p atient’s quality o f life is im portant. It has been suggested by some researchers that the opinion o f the spouse o r caregiver should be included in quality o f life assessm ents (Wenger et al, 1984; K inney et al, 1996). The p a tie n t’s o p in io n o f h is/h er quality o f life is considered to be the only true reflection o f that particular life experi­ ence. The opinion o f the spouse/care­ giver is also o f im portance because the reliability o f assessm ents is increased by another resp o n d en t’s perspective. The patient also does not usually live in isolation and therefore the w ay they perceive their life experiences, will be reflected by those around them. M ayou and B ryant (1993) how ever feel that there may be a problem with disagree­ ments and that it is best to consider only the opinion o f the patient. However, to lose the inform ation on how the inter­ vention affects the family, would result in an incom plete evaluation, and in spite o f the possibility o f disagreem ent it w ould be d esirab le to in clude the spouse/caregiver. THE DOMAINS THAT CONSTITUTE QUALITY OF LIFE: A cco rd in g to G ill and F einstein (1994) the dom ains under investigation in quality o f life research are frequently not identified (identified only in 47% o f cases). There is as yet no universal definition o f quality o f life but it is generally felt that quality of life can be represented by fo u r im portant areas (dom ains) [Kinney et al, 1996] • Sym ptom s and side effects • Physical function • Social function • Psychological status Although Kinney et al (1996) feel that these domains fully represent quality of life the authors are o f the opinion that these dom ains are incom plete because inform ation is lacking on sexual activity, SA J o u r n a l ' o f P h y s io th e ra p y 2000 V o l 56 No 4 13 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 3. ) cognitive functioning, and life satis­ faction. There is also too little emphasis o f the patient’s own perception o f his/ her health and therefore the suggested definition by Ory et al (1994) is more inclusive. A ccording to S tew art and Ware (1992) the domains com m only thought to com prise health related quality o f life are: physical health, em otional health, cognitive functioning, sexual functioning, social role perform ance, w ork produc­ tivity, and life satisfaction. T hese dom ains correlate well with those described by Ory (1994) except fo r co g n itiv e fu n ctio n in g , and they cover all areas that are essential for the evaluation o f quality o f life. The cogni­ tive function o f the patient is said not to be affected by bypass surgery (K lonoff et al, 1989) and therefore it is suggested that the m ost relevant and acceptable dom ains are those described by Ory (1994). They are physical health, fu n ctio n al ability, em o tio n al health (depression, anger, anxiety and p e r­ ceived stress), sexual functioning, work productivity and social perform ance and life satisfaction. Q uality o f life as a dynam ic construct is frequently ignored in medical research. W hen assessing quality o f life it is assum ed that the point o f reference does not change, m eaning that an individual’s attitu d e tow ards a certain co n stru ct (concept) rem ains the same. However, it is im portant to bear in mind that atti­ tudes are not constant and are constantly m odified by phenom ena such as adapta­ tion, coping and self-control. Researchers in quality o f life issues have recognised betw een-subject differences when deter­ mining the content o f the m easuring in stru m en t. H ow ever, according to A llison et al (1997), w ithin-subject dif­ ferences (i.e. the fact that the individual changes the standards by w hich he/she assesses his/her quality o f life) have been largely ignored. To explain the foregoing statement consider the following: In a study on transplant recipients and haem odialysis patients by Evans (1991) he reported that these patients were often happier, more satisfied and reported a better quality o f life than healthy patients. The standard by w hich these patients assessed their quality o f life was different from the “normal” population because o f a process o f adaptation, coping and self-control. A possible way to overcom e this problem when researching quality o f life is to com pare the post intervention m easu rem en t w ith referen ce to the pre-intervention m easurem ent e.g. Are you as active (functional) as before the operation? The use o f individualised question­ naires should also be considered. Patients should be given the opportunity to decide for them selves w hich aspects o f their lives they value more (weigh the im portance o f the dom ains) but not actually choose the questions them ­ selves. Patients may decide that their social function is m ore im portant than their physical function. However, the research er should still design the questions to determ ine social and physi­ cal function. Finally, pre-in terv en tio n ch a ra c te ­ ristics should be evaluated. In 1982, Cohen suggested that patien ts’ “life- plans” in terms o f their goals and hopes should be taken into account when con­ sidering quality o f life and also whether interventions resulted in the fulfillm ent o f their “life-plan” or resulted in frustra­ tion. This would be difficult because phenom ena such as coping strategies, adaptation, expectations and optim ism would then be ignored. G oodinson and Singleton (1989) have suggested that the inform ation appropriate to a patient’s im proved quality o f life can not be separated from coping strategies and past experiences o f illness. I f these ch aracteristics cou ld be d eterm ined before the intervention the data obtained would not be com prom ised due to their tem peram ent or attitude. SHORTCOMINGS OF QUALITY OF LIFE MEASUREMENTS It is no longer adequate to dem onstrate that m edical in terv en tio n s re su lt in physiological changes unless an accom ­ panying change in life function can also be dem onstrated (Lom as et al,- 1987). It seems that quality o f life m easures that have relied on clinical judgem ent alone, may have in ad eq u ately rep resen ted patient values. Frequently the focus was on objective m easures and not on subjective indi­ cators o f quality o f life (O ’Young and M cP eek, 1987) and these m easures were taken only as a single evaluation (H ollandsw orth, 1988). T h ere is w id esp read scepticism w hether quality o f life can be measured in any m eaningful m anner because o f inadequate measures used to assess the im pact o f cardiac disease and its treat­ m ent on the lives o f patients. However, m ethods are constantly im proving and there are a num ber o f standard m easures o f quality o f life available m aking qua­ lity o f life assessm ents possible and w orthw hile (M ayou and Bryant, 1993). The relevance o f quality o f life m easures is freq u en tly n ot ex p lain ed to the practising clinician. The principal goal o f clinical care is to im prove patient outcom es. In order for physicians to em brace the concept o f m easuring health related quality o f life the validity o f these m easures m ust be proved and it m ust be clear to them how they will be able to use this data (W ilson and Cleary, 1995). An interesting opinion expressed by G ill and F ein stein (1994) is that, because quality o f life is such an “uniquely, personal perception” , it can be m easured only by determ ining the opinions o f patients and supplem enting existing methods. Any assessm ent instrum ent should allow patients to add additional items they consider im portant which may not have been included in the questionnaire (Gill and Feinstein, 1994). A sum m ary o f the shortcom ings o f im proved quality o f life measures • Q uality o f life is n ot adequately defined. • The focus is m ainly on physical func­ tion, symptoms and side effects. • M easurem ents are taken at one point in time only • There is no evidence o f the validity, reliability or sensitivity o f existing m easures to detect change • The relevance o f the findings for the clinician is not indicated • There is usually no opportunity for patients to add on to the m easuring instrum ent, items that they consider important. • The dom ains are not clearly defined 14 SA J o u r n a l o f P h y s io th e ra p y 2000 V o l 56 No 4 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 3. ) IMPORTANT INFORMATION GAINED FROM PREVIOUS STUDIES 1. Few studies included subjective indi­ cators o f quality o f life and that many focused on objective indicators only ( O ’Young and M cPeek, 1987). 2. There is a tendency to rely on one time evaluations only (Hollandsworth, 1988). 3. The opinion o f the spouse or care­ giver should be included in quality o f life assessm ents (W enger, 1984; Kinney et al, 1996). The patient’s opinion o f his/her quality o f life is the only true reflection o f that partic­ ular life experience but the opinion o f the spouse/caregiver is also o f im portance because the reliability o f assessm ents is increased by another respondent’s perspective. There is am ple evidence in the lite­ rature that successful outcom e o f a m edical or rehabilitation intervention should be m easured in term s o f an im provem ent in quality o f life. The above three points confirm the im por­ tance o f self reported im proved quality o f life and that no m easure o f quality o f life is adequate if it does not include the patient’s own perceptions. REFERENCES Allison PJ, Locker D, Feine JS 1997 Quality o f life: a dynamic construct. 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Journal o f the American Medical Association 273: 5 9 - 6 5 World Health Organization 1964 Rehabili­ tation o f patients with cardiovascular diseases: report o f a WHO Expert Committee. Geneva World Health Organization 1980 International Classification o f Im pairm ents, D isabilities, and Handicaps. Geneva Pilates training Course & Equipment Two week Full-time course: • Supervised Pilates workouts • Observation • Practical teaching '• Assisted teaching . , • Lecture, theory &application Weekend workshops • Offering clinical Pilates for physiotherapists & New York Pilates all levels. Certification offered. Natasha Made], Studio Director & the only certified Pilates instructor in South Africa ,who has received her certification from Romana Kryzanowska. Romana Kryzanowska was a disciple of Joseph Pilates & is a director of the Pilates studio teacher training program in New York. 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