INVESTIGATION INTO COMPLIANCE WITH PHYSIOTHERAPY REGIMEN IN CYSTIC FIBROSIS* L M Davids BSc Physiotherapy, BA Hons Control physiotherapist, Red Cross War Memorial Children’s Hospital, Rondebosch, Cape L D Henley PhD Research Officer, Department of Paediatrics, University of Cape Town Cystic fibrosis (CF) is a chronic disease which requires lifelong intensive medical supervision. The treatment regimen is multifaceted and complicated, demanding continuous care­ ful monitoring by the family, especially the mother. A d­ herence to all aspects of the regimen at all times is probably rarely achieved. Chest physiotherapy (CPT) is the most time- consuming and least liked aspect of therapy1 and compliance is likely to be poor. It has long been felt by one of the authors (LD) that regular CPT was not being performed on the majority of the patients attending the CF clinic at the Red Cross War Memo­ rial Children’s Hospital. If this is correct it would be of importance to know whether the lack of regular CPT had any effect on the medical status of the patients. The aims of this study were to assess the regularity of CPT and/or alternative therapies administered to CF child­ ren. The relationship between regular CPT and clinical out­ come as measured by the number of days in hospital was determined. The influence of selected sociodemographic variables (age of patient, social class of family) on compliance with regular CPT as well as patient attitudes to this therapy were also studied. Literature Study In recent years the actual benefits of regular CPT, i.e. postural drainage, percussion, vibrations and cough, have come under scrutiny. Various alternative therapies have been investigated. There is general agreement that in advanced disease CPT has a role to play. Evidence of its importance in the moderate and mild cases is conflicting.2 Chest Physiotherapy Reisman et al in a recent three year prospective study have shown that patients receiving conventional CPT have less deterioration in pulmonary function than those practising forced expiration technique (FET). All patients took some form of exercise. They conclude that even in patients whose symptoms and sputum production are minimal, pulmonary disease progressed more rapidly when CPT is not practised. This is the most positive evidence to date for the use of regular CPT. SUMMARY A cross-sectional postal survey was conducted among 66 patients with cystic fibrosis and their parents to determine the nature and frequency of performance of chest physiotherapy, physical exercise and nebuliza- tion. Data were collected by means of structured ques­ tionnaires. Fifty-five patients received chest physiotherapy. Approximately 48% of these patients re­ ceived physiotherapy once or twice a day whereas the remaining patients did physiotherapy only in the presence of a chest infection or once or twice a week. No sociodemographic or medical data were significant­ ly associated with how often physiotherapy was per­ formed. Three-quarters of the patients engaged in physical exercise. Fourteen patients substituted exer­ cise for physiotherapy although more than half this group relied upon physiotherapy during respiratory in­ fections. Findings suggested a measure of ignorance concerning the methods of chest physiotherapy. Of the 50% of patients who used a nebulizer almost one half were inadvertently nebulizing antibiotics before physiotherapy. Findings are discussed in the light of current controversies surrounding the efficacy of chest physiotherapy in the treatment of cystic fibrosis. OPSOMMING ’n Dwarsprofiel oorsig is per pos gedoen onder 66 pa­ siente met sistiesefibrose en hul ouers om die aard en frekwensie van die uitvoer van borsfisioterapie, fisiese oefening en nebulisasie vas te stel. Data was versamel deur middel van gestruktureerde vraelyste. Vyf-en- vyftig pasiente het borsfisioterapie ontvang. Ongeveer 48% van hierdie pasiente het fisioterapie een of twee maal per dag ontvang, terwyl die oorblywende pa­ siente dit slegs in die teenwoordigheid van 'n borsin- feksie ontvang het of een of twee maal per week. Geen sosiodemografiese of mediese data was aanmerklik verbonde met hoe dikwels fisioterapie uitgevoer is nie. Drie-kwart van die pasiente het deelgeneem in fisiese oefening. Veertien pasiente het oefening vir fisioterapie substitueer, alhoewel meer as die helfte van hierdie groep staat gemaak het op fisioterapie gedurende res- piratoriese infeksie. Die bevindings stel ’n mate van on- kunde in verband met die metode van borsfisioterapie voor. Van die 50% van pasiente wat ’n stuifsproeier ge- bruik het, het amper die helfte onbewus antibiotikas v66r fisioterapie verstuif. Die bevindings word be- spreek in die lig van die huidige twispunt wat die werk- saamheid van borsfisioterapie in die behandeling van sistiesefibrose omsingel. Paper read at the Congress of the South Afican Society of Physiotherapy, Durban, May 1989. Physiotherapy, February 1990, vol 46 no 1 Page 7 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. ) Earlier work concludes that conventional CPT is of value in patients with large sputum volumes.4,5,6 Most of these studies deal with short term effects. Alternative Techniques A number of techniques which are simpler to perform and less time-consuming have been investigated. Because directed coughing is simple and the patient can do it by himself, studies were performed to find out whether it is as effective as CPT. Conflicting results were obtained with de Boeck and Zinman7 finding cough as effective as CPT, while Bateman et al8 found CPT the more effective. Positive expiratory pressure (PEP) as an alternative therapy, has also been investigated. Again the results are inconclusive. Van Hengstum et al9 found PEP less effective than FET but van Asperen et al10 found PEP as effective as conventional CPT. Exercise is being increasingly advocated. Before pres­ cribing exercise, care needs to be taken in assessing the respiratory status of the individual patient. Generally exercise forms a useful adjunct to the other therapies.11,12, Coates2 concludes that “In demonstrable lung disease, some form of therapy aimed at improving pulmonary toilet has a role to play in the treatment of CF”. It would seem that conventional CPT is still the basic standard with which all other therapies must be compared. Compliance “Lying head down over a bed once or twice a day for 20 minutes is an exercise that few doctors would find time to adopt unless the rewards were appreciable”.14 It is not sur­ prising that most CF patients find conventional CPT tedious and unpleasant to perform. The immediate effects of CPT are not obvious in the mild or moderate case and it is these patients who are less com­ pliant. Eigen et al15 maintain that compliance with a medical regimen is improved when there is evidence that the treat­ ment is effective. The physiotherapy regimen is complicated and time-consuming and frequently interferes with the family dynamics. The quality o f life of the patient and his family may be affected by CPT.1 In a study done16 comparing FET with CPT it was found that compliance with either o f these regimens depended on the family attitudes and interpersonal relationships. Fong et al17 found that the patients who worried more about their health were more likely to be compliant with the medical regimen. The physiotherapy schedule was an obstacle to full compliance. They suggested that stressing the severity of the disease and the effectiveness of CPT might improve com­ pliance. Muszynski-Kwan et al18 in their review of compliance with a CPT regimen recommend a realistic and individualised approach to each patient. They find that the therapist and the patient must cooperate and the treatment protocol must take into account the patient’s life-style as well as his pulmonary status. There is general consensus that a holistic approach must be used in order to prescribe the most effective and yet the least intrusive programme of physiotherapy. METHOD The study design consisted of a cross-sectional survey among all the patients with CF and their parents who attended the CF clinic at the Red Cross War Memorial Children’s Hospital in Cape Town between January 1,1985 and June 30, 1988. This is the only referral centre for CF patients in the region and 76 patients were seen during this period. One family could not be traced. Letters were sent to the remaining 70 families (5 families had 2 affected children) to advise them of the aims of the study and a structured questionnaire, in the home language of choice, was sent to each family. The ques­ tionnaire was pretested for acceptance and comprehension among 6 CF families. After 4 weeks a second questionnaire was sent to families who did not respond to the initial mailing. Fixed-choice questions examined the following aspects of the CF treatment regimen: chest physiotherapy (postural drainage, percussion, vibrator, Phys-Pep mask,1 forced ex­ piratory technique), physical exercise and nebulization. Socio-demographic (age) and medical (number o f days in hospital) data were obtained from clinic records. Social class was determined by father’s occupation in accordance with the British Registrar General’s grading system 20 Permission for this study was granted by the Ethics and Research Committee of the University of Cape Town Medi­ cal Faculty. The Chi-square and Wilcoxon rank sum tests were used to examine relationships between variables. RESULTS Completed questionnaires were received from 66 pa­ tients. This reflected a response rate of 88 percent. Fifty-six questionnaires were completed by mothers, 8 by patients and 2 by fathers. Physiotherapy was performed most frequently by mothers (n = 35) followed by the patients themselves (n = 12). Fathers (n = 8) were least likely to administer physiotherapy. The mean age o f CF patients was 9.3 years (range 1-24 years). Fifty-three percent o f patients came from social classes I and II. Twenty-five (37.9%) patients had spent an average of 35.5 days in hospital (range 4-70 days) between January 1,1985 and June 30,1988. Chest Physiotherapy and Physical Exercise Respondents had to indicate whether chest physiother­ apy and/or physical exercise formed a part of the CF patient’s TABLE I TECHNIQUES OF PHYSIOTHERAPY (% DISTRIBUTION) USED BY CF PATIENTS1 n %2 x Age (yrs) Postural drainage 10 18.2 6.5 Percussion 31 56.4 6.7 Vibrator 10 18.2 12.5 Phys-Pep mask 21 38.2 12.9 Forced expiratory technique 10 18.2 13.6 1 n = 55 2 Total is greater than 100% as patients use multiple techniques. Bladsy 8 Fisioterapie, Februarie 1990, dee! 46 no 1 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. ) treatment regimen. Six patients did not perform physiother­ apy or exercise, 11 performed physiotherapy only and 5 pa­ tients included both physiotherapy and exercise in their treatment. Fourteen patients engaged in exercise in place of regular physiotherapy although nine of these patients relied upon physiotherapy in the presence of respiratory infections. Thus a total of 55 patients (83.3%) were doing physiotherapy either alone or in combination with physical exercise. The frequency and mean age of patients using the differ­ ent techniques of physiotherapy are presented in Table I. Respondents had to indicate whether the patient coughed during physiotherapy and the approximate amount of sputum produced during coughing. Only four (7.3%) out of the 55 patients did not cough during physiotherapy. Most (84.0%) were “fairly productive” and 5% were “very productive”. In most patients (78%) each physiotherapy session lasted about 15 minutes but ten (18%) patients took between 15 and 20 minutes to complete physiotherapy. Only two (4%) patients had sessions' lasting approximately 45 minutes. Respondents had to describe the patient’s reaction to physiotherapy. Seventy-one percent “tolerated” physiotherapy, with equal proportions (14.5%) either “enjoying” or “hating” this aspect of treatment. TABLE II FREQUENCY OF PERFORMANCE OF PHYSIOTHERAPY (% DISTRIBUTION)1 n % Only when infected 23 Once a day 13 Twice a day 13 Once a week 1 Twice a week 41.8 23.6 23.6 1.8 9.1 n = 55 The frequency (i.e. how often) of performance of physiotherapy is presented in Table II. For the purpose of this study “regular” physiotherapy has been defined as “at least on ce or tw ice a day”. O f th ose p atien ts perform ing physiotherapy less than half (47.3%) were doing so regularly. The remaining 52.7% performed physiotherapy somewhat irregularly, i.e. once or twice a week or only when a chest infection was present. The frequency of performance was further analysed according to patient’s age, social class and whether he/she had been hospitalised. None were significant­ ly associated with the “regular” or “irregular” performance of physiotherapy. Frequency was also analysed according to the number of days patients had spent in hospital. There was no significant difference in the length of hospitalisation of pa­ tients who performed physiotherapy on a regular or irregular basis ( x 37.9 versus x 20.5 days respectively z = 1.81, p = 0.07). Seventy-four percent o f all patients engaged in physical exercise. Running was the most popular form of exercise (n = 26) followed by swimming (n = 22) and trampolining (n = 17). Other frequently reported forms of exercise in­ cluded skipping, aerobics, somersaults, dancing, gymnastics, cycling, tennis and horse-riding. R esp on dents had to specify which tech nique of physiotherapy or physical exercise was the most effective for removing secretions. Almost half the sample selected physical exercise whereas postural drainage and the vibrator were the TABLE III DISTRIBUTION OF RESPONDENTS' PERCEPTIONS OF MOST EFFECTIVE METHOD FOR REMOVING SECRETIONS.1 . Preferred technique n Postural drainage 2 Percussion 11 Vibrator 3 Phys-pep mask 9 Forced expiratory technique 6 Physical exercise 29 1 n = 60 (6 patients did not do physiotherapy or exercise). least favoured methods for mobilising secretions (Table III). Nebulization Thirty-three patients (50%) used a nebulizer. Almost half of these patients (n = 16) used the nebulizer twice daily, seven patients used it once a day and eight only in the presence of a chest infection. Findings reflecting which medicines were used in the nebulizer and whether they were administered before or after physiotherapy are presented in Table IV. TABLE IV NATURE AND TIMING OF MEDICATION USED BY CF PATIENTS DURING NEBULIZATION.1 Physiotherapy Medication Before After Mistabron ‘ 19 Ventolin 22 3 Antibiotics 10 11 1 n = 33 DISCUSSION At the Red Cross Was Memorial Children’s Hospital CF clinic a physiotherapist is available to assist patients. New patients are taught postural drainage, i.e. tipping and posi­ tioning from side to side and percussion. The importance of CPT is stressed including coughing. As the patients grow older more techniques are demonstrated to the parents, viz. FET, Phys-Pep and the use of a mechanical vibrator. Exercise is promoted. The physiotherapy programme is further dis­ cussed with those parents who request it. It can be seen from Table I that this system is not really adequate. In Table 1,31 patients reported that percussion was used and yet only ten reported using postural drainage. The use o f percussion and/or the vibrator implies the use of pos­ tural drainage. Either the terminology was not understood or CPT is not being properly carried out. FET can also be used with postural drainage or when using the Phys-Pep mask. It is obvious from the replies that the whole physiotherapy pro­ gramme needs to be revised and individualised. Only 26 of the 66 respondents, i.e. ±40% performed regular (once or twice a day) CPT. This group included mild, moderate and severely affected patients. Twelve of the 26 were not hospitalised during the period under consideration. Physiotherapy, February 1990, vol 46 no 1 Page 9 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. ) N o significant difference was found in the periods of hospi­ talisation of those performing regular CPT and those doing it on an ad hoc basis. Days in hospital was the only parameter available to the authors by which the effectiveness o f CPT could be assessed. The patients at the clinic do not have routine regular chest X-rays or lung function studies to monitor pulmonary status. It is thought that since the long-term prognosis is poor, regu­ lar testing may cause anxiety in patients and parents and add little to clinical decisions on treatment (personal communica­ tion). Our results suggest that regular CPT plays a very small role in the general medical status of the patients. However, some form of pulmonary toilet is carried out by the majority of our patients (55/66) either as CPT when thought to be indicated or as regular exercise - so it is difficult to judge the importance of regular CPT. In the light of the Toronto study of Reisman et al which maintains that deterioration of pul­ monary function was less in those receiving conventional CPT, more accurate background data (Chest X-rays, pul­ monary function studies) are needed in order to establish the actual importance of regular CPT versus an ad hoc pulmonary toilet. It is interesting to note (Table III) that physical exercise was perceived to be the most effective method o f removing secretions. Physical exercise is enjoyed by most people and the child is active during that period. CPT is essentially a passive treatment (except for coughing) and the child must be controlled. This demands much more psychologically from both parent and child. It is possible that the patients’ and parents’ perceptions of effectiveness and their enjoyment of the exercise are very closely linked. Table IV shows the timing and nature o f the medication used by means of nebulization. It is generally accepted that nebulized antibiotics should be given after CPT because the drugs are not easily absorbed into mucus-filled airways.21 If a mucolytic and/or a broncho-dilator are being used, these should be administered before CPT and a double period of nebulization is necessary. What usually happens is that all the substances are nebulized together before CPT to save time. It is doubtful if in these circumstances much o f the antibiotic « • • > ♦ 91is absorbed and it’s effectiveness may be diminished. Broncho-dilators in a nebulized form are effective,22 but whether mucolytics administered in this way affect the spu­ tum is dubious. The nebulized mucolytic probably does not reach far enough down the airways to thin secretions. A short period of broncho-dilator nebulization followed by effective CPT and then a period of antibiotic nebulization (if indicated) would appear to be the most logical theoretical sequence. CONCLUSION In the CF patient the whole treatment regimen needs to be individualised. The attitude of the child and his family including their lifestyle must be taken into consideration. It is doubtful whether one should impose a full CPT programme on a generally well child or one with predominantly digestive symptoms. Exercise and/or Phys-Pep with FET might well be sufficient. More studies need to be performed to confirm the Toronto experience which suggests that CPT is effective in preventive as well as maintenance care. Such studies would require regular chest radiographs and pulmonary function tests to provide reliable evidence of improvement or deterior­ ation. If the effectiveness of CPT can be shown, its importance must be conveyed to the parents and patients. Understanding of an individualised programme should improve compliance with the treatment regimen. REFERENCES 1. Burton L. The family life o f sick children. London: Routledge & Kegan Paul, 1975;94-6. 2. Coates A L The efficacy of chest physical therapy in cystic fibrosis. Pediatr Pulmonol 1988;5(Suppl 12):51-52. 3. Reisman JJ, Rivington-Law B, Corey M et al. Role of conventional physiotherapy in cystic fibrosis. J Pediatr 1988;113:623-6. 4. Bateman JRM, Newman SP, Daunt KM et al. 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Martin Dunitz, 1987;62. A Bladsy 10 Fisioterapie, Februarie 1990, dee146 no 1 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. )