RESPIRATORY MEDICINE (1999) 93, 46-51 Prescription and usage of long-term oxygen therapy in patients with chronic obstructive pulmonary disease in the Netherlands M. J. KAMPELMACHER~, R. G. VAN KESTEREN*, G. P. J. ALSBACH+, C. F. MELISSANT*, H. J. WYI?NE§, J. M. C. DOUZE” AND J.-W. J. LAMMERS* Cenfre for Home Mechanical Ventilation, “Division of Infernal Medicine and Dermatology, ‘Division of Obstetrics and Gynaecology and *Department of Pulmonary Diseases,Heart Lung Institute, University Hospital Ufrechf, and ‘Cenfre for Biosfafisfics, University of Ufrechf, Utrecht, The Netherlands Long-term oxygen therapy (LTOT) has been shown to improve survival in hypoxaemic patients with chronic obstructive pulmonary disease (COPD). This has resulted in recommending the prescription of oxygen for at least 15 h day- ’ in most European countries. In order to examine the prescription and usage of LTOT and to assess the adherence to international recommendations for its prescription, a survey was set up in a random sample of clients of the largest oxygen company in the Netherlands. After patients had been visited for an interview, additional postal surveyswere sent to the physician who had prescribed LTOT and to the oxygen company. For 175 COPD patients the mean oxygen prescription and mean oxygen usage were 15.6 f 5.8 and 14.1 & 6.8 h day - ‘, respectively. In 62 patients (35%) oxygen was prescribed < 15 h day - ‘, more often by non-chest physicians than by chest physicians (P<O.OOOl),and 91 patients (52%) used oxygen < 15 h day- ‘. Of 113 patients with a prescription 2 15 h day - ‘, 39 (35%) used oxygen < 15 h day - ’ and 74 for 2 15 h day - ‘. The latter were prescribed oxygen for more h day - i , had been longer on LTOT, had a higher resting flow rate, were prescribed a concentrator, employed portable cylinders and used oxygen in public significantly more often than the former, We conclude that in a selected group of LTOT patients with COPD both oxygen prescription and usage were often inadequate, particularly if LTOT was prescribed by non-chest physicians. RESPIR. MED. (1999) 93, 46-51 Introduction Long-term oxygen therapy (LTOT) has been shown to improve survival in hypoxaemic patients with chronic obstructive pulmonary disease (COPD) (1,2). As a result, the American Thoracic Society and the European Respiratory Society have issued recommendations for the prescription of LTOT and in many countries prescription guidelines have been formulated, which usually recommend prescribing oxygen for at least 15 h day - ’ (3-5). In 1992 some 6000 patients in the Netherlands were prescribed LTOT and the number of LTOT patients per 100 000 inhabitants was one of the highest in Europe (6). Nevertheless, national prescription guidelines have not been Received 24 March 1998 and accepted in revised form 14 October 1998. Correspondenceshould be addressedto M. J. Kampelmacher, MD, PhD, Centre for Home MechanicalVentilation, HP C02. 410, University Hospital Utrecht, P. 0. Box 85500, 3508 GA Utrecht, The Netherlands 0954-6111/99/010046+06 $12.0010 issued yet. In the same year the impression was created, by both patients and oxygen companies, that the therapy was often prescribed improperly. In addition, little was known about oxygen usage and data on compliance were lacking. On the basis of the literature compliance to therapy was expected to be poor (7-11). Finally, factors affecting compliance had not yet been extensively clarified. The aims of this study were, therefore, to examine the prescription and usage of LTOT in COPD patients, to assesspatient compliance to the therapy and to analyse the adherence to international recommendations for the prescription of LTOT. Methods STUDY DESIGN The patients of this study took party set up in a sample of 2523 clients company in the Netherlands (Hoek the Netherlands) (12). After they 0 1999 in a survey which was of the largest oxygen Loos Co., Schiedam, had been coded by W. B. SAUNDERS COMPANY LTD OXYGEN number, 138 1 patients were randomly chosen by computer. Subsequently, patients were selected if they were at least 18 years, had a telephone connection and had possessed oxygen equipment at home for at least 6 months. Of the 895 patients who fulfilled these criteria, 341 (38%) refused to participate and 26 (3%) could not take part for reasons of severe illness or early death. A total of 528 patients, including 369 COPD patients, were visited at home for an interview by a medical student. Prior to the visit, the students had been trained in formulating the questions of a questionnaire and they had been instructed that all questions had to be answered by the patients themselves. At the end of the interview each patient was asked for informed consent to send additional postal surveys both to the physician who had prescribed LTOT and to the oxygen company. This study was approved by the Medical Ethics Committee of our hospital. DEFINITIONS AND MEASUREMENTS PrePhy is the daily length of the treatment prescribed, according to the physician. In the assessmentof the extent to which physicians followed the international recommendations for LTOT prescription, a daily oxygen prescription 215h day-’ was defined as ‘adequate’, while a prescription < 15 h day - i was considered as ‘inadequate’ (3,4X As oxygen usage was not actually measured and reliable data on this matter could not be obtained from the oxygen company, daily oxygen usage was assumed to be as stated by the patients (UsaPat). The one and only controlled trial comparing oxygen with no oxygen in severe chronic hypoxaemia showed that the minimum time for clinical benefit was 15 h day - r (2). For this reason, patients using LTOT for a minimum of 15 h day - ’ were defined as ‘effective’ users of treatment, while patients using it for c15h day-’ were considered to be ‘ineffective’ users. Patients who were prescribed oxygen for 2 15 h day - ’ and who also used it for this number of hours were classified as ‘compliant’. Those with a prescription of L 15 h day - ‘, but who used oxygen for < 15 h day - ’ were classed as ‘non-compliant’. DATA ANALYSIS Data analysis was performed and descriptive statistics obtained using the SPSS/PC+program (SPSS Inc., Chicago, U.S.A.). Continuous values are reported as mean 5 SD. Subgroups were compared by Mann-Whitney U-tests for continuous variables, and by Fisher’s exact tests in contingency tables for categorical variables. Linear regression analysis was applied to relate UsaPat to PrePhy. The physicians’ answers were supposed to represent the prescription correctly and were, therefore, regarded as the predicting variable. Two-sided tests were employed throughout and a P-value of ~0.05 was considered significant. PRESCRIPTION AND USAGE IN COPD PATIENTS 47 Results For 175 COPD patients data on both oxygen prescription and usage were available. Table 1 lists their characteristics and those of the 194 COPD patients who were excluded because their doctors did not reply. No statistically significant differences were found between both patient groups. OXYGEN PRESCRIPTION Apart from the fact that the number of daily hours of oxygen prescribed was unknown to 52 patients (30%), patients and physicians held different views on the daily length prescribed (Table 2). A prescription 2 15 h day - i was not related to age or mobility of the patients, the number of follow-up visits or duration of LTOT. The median flow rate prescribed was 1.O1min - ‘, both at rest, during exercise and sleep. Sixty-three patients (36%) stated that LTOT had mainly been prescribed for dyspnoea. In 149 patients (85%) LTOT had been prescribed by a chest physician, in 17 (10%) by a general practitioner (GP) and in nine (5%) by an internist. GPs wrote prescriptions more often than chest physicians on the basis of ‘if necessary’ (P<O.OOl). The latter prescribed oxygen more often >15hday-’ than non-chest physicians (BO.001). Usually the decision between an oxygen concentrator and cylinders was left to the oxygen company. Liquid oxygen, however, was only installed if prescribed by a physician. OXYGEN USAGE More than half of the patients used oxygen ~15 h day- ’ and 10 applied it only ‘if necessary’ (Table 2). For 175 patients the mean UsaPat and mean PrePhy were 14.1 & 6.8 and 15.6 f 5.8 h day- ‘, respectively, with the following relationship: UsaPat = 3.9 + 0.66 * PrePhy; P<O.OOl for H,,P=l (Fig. 1). Although UsaPat increased with PrePhy, increasing the length prescribed did not guarantee a usage of 2 15 h day-‘. As compared to patients using ~15 h day-‘, those using oxygen 2 15 h day- i had been prescribed LTOT more often L 15 h day - ’ than c 15 h day - ’ (P<O.OOl). This was done more frequently by chest physicians than by non-chest physicians (P=O.O06), and mainly for hypoxaemia rather than dyspnoea (P=O.O097). In addition, patients who used oxygen 2 15 h day - ’ were more often women (P=O.O19), used a concentrator more frequently (P<O.OOl), had more complaints due to LTOT (P=O.O04) and had been prescribed a higher flow rate at rest (BO.001) than the patients who used it < 15 h day- ‘. UsaPat-PrePhy was negative in 83 (47%) and positive in 47 patients (27%), and decreased with PrePhy. The number of patients who used fewer daily hours than prescribed was larger if oxygen was prescribed L 15 h day - ’ than if it was prescribed < 15 h day - ’ (P=O.O023), and increased with PrePhy (Fig. 2). Of the 113 patients with an oxygen prescription of 2 15 h day - ‘, 39 patients (35%) used oxygen < 15 h day - I and 74 for >15hday-‘. The latter differed from the former with 48 M. J. KAMPELMACI~ER ET AL 1. Demographic and clinical data for the COPD patients who were included and for those excluded because their physicians did not reply* TABLE Included (n= 175) Excluded (n= 194) 12550 70.1 f 7.7 3.3 f 3.2 16.8 f 5.8 14.1 f 6.8 - 0.5 f 2.6 4.5 f 4.7 149 (85) 17 (10) 127 (73) 28 (16) 36 (21) 111 (63) 136:58 69.0 zt 9.7 3.9 f 3.5 16.5 f 7.3 12.8 zk8.0 - 1.0*4.4 4.3 * 4.5 166 (86) 21 (11) 135 (70) 35 (18) 50 (26) 126 (65) Oxygen source Cylinders Concentrator Liquid Combination Receiving portable cylinders Using portable cylinders 2 1 week - i 144 (82) 22 (13) 7 (4) 2 (1) 112 (64) 35 (31) 157 (81) 25 (13) 9 (5) 3 (2) 114 (59) 39 (34) Delivery device Nasal prongs Nasopharyngeal catheter Cuffed nasal catheter Transtracheal microcatheter Oxygen mask Other 157 (90) 9 (5) 4 (2) 2 (1) 1 (1) 2 (1) 166 (86) 17 (9) 5 (3) 3 (2) 90 (51) 18 (10) 66 (38) 81 (46) 81 (46) 105 (54) 14 (7) 70 (36) 74 (38) 77 (40) Sex ratio (M:F) Age (years) Duration of LTOT (years) Oxygen prescription (h day - ‘) Oxygen usage (h day - ‘) Overall compliance (h day- ‘) Visits to physician (n yr - ‘) Prescribed by chest physician Prescribed by general practitioner Ex-smokers Smokers Living alone Needing help from other people Complaints (61% had >one complaint) Restricted autonomy Duration of therapy Shame Oxygen source Delivery device 3 (2) *All data were provided by the patients. Values are presented either as mean f SD or as number of patients with percentage in parentheses. None of the differences were statistically significant, respect to the oxygen prescription and usage, duration of LTOT, resting flow rate, and concentrator and portable cylinder use (Table 3). There were, however, no differences in age, sex, reason for starting LTOT, prescribing physician, the number of smokers, complaints due to the treatment, reduction of dyspnoea following the start of LTOT, living conditions or in the number of follow-up visits between compliant and non-compliant patients, all of whom had an oxygen prescription of 2 15 h day - ‘. Discussion This study demonstrates that in a selected group of LTOT patients with COPD more than one-third of the physicians who prescribed LTOT did not adhere to international recommendations, more than half of the patients used oxygen ineffectively, and almost half of the patients used it for fewer daily hours than prescribed. Inadequate prescription was probably caused by the still-existing misconception that the therapy is aimed at the symptomatic relief of breathlessness, and also by non-adherence to the international recommendations because physicians were apparently not aware of them. The duration of the treatment prescribed was inadequate, particularly if it was done by non-chest physicians. This finding is consistent with several other studies (10,13,14). In some European countries the prescription of LTOT is, therefore, restricted to chest physicians (15,16). OXYGEN TABLE2. Oxygen prescription (Pre) and oxygen usage (Usa) according to physicians (Phy) and patients (Pat) (n= 175)* Period If necessary only At night only Continuously Miscellaneous Unknown Daily hours 215 <I5 Unknown PrePhy PrePat UsaPat 2 (1) 31 (18) 46 (26) 44 (25) 52 (30) 23 (13) 46 (26) 56 (32) 31 (18) 19 (11) 10 (6) 48 (27) 55 (31) 62 (35) 113 (65) 62 (35) 91 (52) 32 (18) 52 (30) 84 (48) 91 (52) 3 6 9 12 15 18 PATIENTS 49 60, <8 Prescribeddaily hours FIG. 2. Difference between the used (U) and prescribed *Values are presented as numbers of patients with percentages in parentheses. I 0 PRESCRIPTION AND USAGE IN COPD 21 24 Prescription (h day-‘) FIG. 1. Individual and average relationship between daily oxygen usage, according to the patient, and daily oxygen prescription, as given by the physician, in 175 COPD patients (r=0.56; P<O.OOl). Individual data points are shown. Solid lines represent the mean f SD. The horizontal dashed line distinguishes effective ( 2 15 h day- i) from ineffective (< 15 h day - ‘) users; the vertical dashed line distinguishes adequate (2 15 h day - ‘) from inadequate (C 15 h day - ‘) prescriptions. The prescription was also inadequate with regard to the oxygen flow rates. Most patients were prescribed l.Olmin-‘? irrespective of their activity level. Such a flow rate is quite low and probably not adequate even at rest (17). To keep them well oxygenated, patients frequently need extra oxygen during sleep and exercise (18). Hence, titration of the oxygen flow rate during sleep and exerciseis recommended to prevent serious hypoxaemia (3,4). Furthermore, both the content of the prescription and the way in which it was given to the patients were frequently inadequate, as 30% of the patients was unaware of the number of daily hours prescribed, and patients and their physicians held different opinions on the prescribed daily (P) daily hours of oxygen therapy per patient, in relation to the prescribed duration of treatment in 175 patients (Mantel-Heanszel test: P=O.O18). The number of patients is given above each bar. (0, U<P; W, U=P; El, U>P.) length of the treatment. Physicians should make every effort to give their patients adequate instructions, preferably orally as well as in writing. It is very plausible that ineffective oxygen usage was caused by the trouble induced by the treatment, like restricted autonomy and complaints due to the oxygen equipment (12). Due to the local density and accessibility of patients and because of the reimbursement policies in the Netherlands the oxygen companies supplied most patients with oxygen cylinders until recently. In addition, ineffective usage may also have been caused by inadequate prescription. Several studies, however, have shown a comparable oxygen usage, even when patients had been prescribed oxygen for 2 15 h day- ’ (11,19,20). In accordance with other studies, our study showed that effective oxygen usage was positively related to disease severity, LTOT duration, concentrator use, oxygen usage during indoor movements and to the resting oxygen flow rate, all of which may be explained by progressive hypoxaemia (9,19). Oxygen usage also increased with the daily hours prescribed. Although important, prescribing enough daily hours was no guarantee for effective usage since, even when oxygen was prescribed continuously, seven out of 35 patients still followed this advice for < 15 h day - i. Furthermore, oxygen usage improved when LTOT had been prescribed by chest physicians. The latter is in keeping with a study in which more than 90% of the 560 patients, who were prescribed oxygen for a mean of 19 h day- i by chest physicians only, reported using oxygen for 2 15 h day - ’ (21). The present findings demonstrate that non-compliance is a serious problem in COPD patients with LTOT. Poor compliance may have been due to a relatively good clinical condition, insufficient motivation and encouragement of patients, and to inconvenience induced by the treatment. Oxygen usage is a problem for many patients, particularly when moving in and around the house, going out and meeting other people. The latter is probably related to the weight of the portable cylinders and to stigmatization caused by the nasal cannulae. Portable liquid oxygen may 50 M. J. KAMPELMACHER ET AL. TABLE 3. Differences between compliant patients (n=74) using oxygen 2 15 h day - i, and non- compliant patients (n = 39) using oxygen < 15 h day - ‘, all of whom had been prescribed oxygen for 215 h day-‘* Prescription according to physicians (h day- i) Prescription according to patients (h day - ‘) Usage according to patients (h day - ‘) Duration of LTOT (years) Resting flow rate (1min - ‘) Urged to use more (h day- *) Concentrator use Use of portable cylinders Use in public Use during transfers at home Use when being visited Use when visiting *Values are given either as mean f SD Compliant Non-compliant P-value 19.5 & 3.8 19.9 f 4.0 20.1 f 3.9 3.4 f 2.8 1.2 f 0.6 l/74 (1) 16/74 (22) 48/59 (81) 59/70 (84) 50/73 (69) 66/74 (89) 39159 (66) 17.9 & 3.2 13.7 & 3.6 9.9 f 3.6 2.4 f 2.1 0.7 * 0.7 4139 (10) 2139 (5) 13124 (54) 19/31 (61) 5139 (13) 6139 (15) 2133 (6) 0.018 <O*OOl <O.OOl 0.048 0.002 0.047 0.013 0.01 0.011 <0~0001 <0~0001 <0~0001 or numbers of patients with percentages in parentheses. facilitate oxygen usage during activities and thereby increase daily oxygen usage (22,23). Given the negative influence of shame on compliance, the latter may be improved by transtracheal oxygen therapy in selected patients (24). The fact that only 10% of the non-compliant patients were urged to use oxygen for more hours a day casts doubt on the effectiveness of the follow-up visits. Encouragement and close supervision of patients, as well as assistance of specially trained nurses forming part of a home care programme are recommended to improve compliance (20,25-27). Being part of a survey which was set up in a random sample of LTOT patients, this study has several limitations. Similar to most other studies in this field, it was retrospective. Consequently, selection bias may have occurred. Only 59% of the 895 selected patients were interviewed. In addition, 194 (53%) of the 369 COPD patients had to be excluded because of a lack of doctors’ postal reply. Although these patients did not differ from the participants, their physicians prescriptions might have. It was not possible to ascertain whether the latter were lessinterested in the field, and thus probably less informed and not adhering to prescription guidelines, or well informed but simply too busy to respond. Furthermore, the information on each patient was limited. Data on lung function, blood gasesand medication were, for example, absent. Finally, the oxygen usage was not actually measured and reliable data on this matter could not be obtained from the oxygen company. As it is well known that patients tend to overestimate their oxygen consumption, oxygen usage and the number of compliant patients in our population are likely to be even lessthan reported (10,19). Nevertheless, the outcome of this study is considered to be representative of the situation in the Netherlands. We conclude that in a selected group of LTOT patients with COPD both oxygen prescription and usage were inadequate, particularly if this treatment was initiated by non-chest physicians. 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