Asthma care and factors affecting medication compliance: the patient's ...

International Journal for Quality in Health Care 2001; Volume 13, Number 5: pp. 375–383

Asthma care and factors affecting medication compliance: the patient’s point of view ¨ M2, MARGARETA MO ¨ LLER3 AND JOHAN AHLNER4 MALOU LINDBERG1, TOMMY EKSTRO 1

Division of General Practice and Primary Care, 2Department of Pulmonary Medicine, 3Department of Neuroscience and Locomotion and 4Division of Clinical Pharmacology, Department of Medicine and Care, Faculty of Health Sciences, Linko¨ping University, Linko¨ping, Sweden

Abstract Objective. To identify important factors that can influence patient compliance with prescribed medication and to elucidate aspects of asthma care from the patient’s point of view. Design. Field investigation; the interviewer used a semi-structured questionnaire. Setting. Patients with asthma in primary health care settings in Sweden. Study participants. A sample of 77 patients was randomly selected from 11 primary health care centres in southern Sweden; 63 of these patients participated in the study. Conclusion. The factors of importance for self-reported compliance with prescribed medication were age, gender, duration of the disease, the attitude of the staff and information/education about asthma. The patients expressed important aspects of care, and these are in accordance with how an asthma nurse practice functions in Sweden. Keywords: asthma, compliance, interview, patient opinions

Introduction Asthma is a major public health problem affecting a large number of individuals of all ages. The severity of asthma varies within and between individuals. The economic burden to society is well documented in industrialized countries [1–3]. Poor asthma control is responsible for a large proportion of the total cost of the disease, and both indirect and direct costs would decrease if control were improved. Poor compliance with prescribed therapy leads to increased morbidity and mortality [3]. During the past decade international guidelines have been introduced with the main purpose of improving the quality of care as well as the management of patients with asthma [4,5]. These guidelines recommend prophylactic medication therapy for asthmatics, and anti-inflammatory medication as a cornerstone of asthma treatment. Long-term compliance or adherence to prescribed therapy is hard to attain [6]. Studies have reported that 50% of patients with a chronic disease do not use their medication at all or do not use it as prescribed [7,8]. Several investigations

have concluded that patients with a chronic disease have an unsatisfactory understanding of their condition and their medication; one such report described patients with hypertension [9]. Hansson Scherman [10] described what it is like to live with asthma and allergies, and how the patients experienced their situation both with respect to ill health, medication and its prescribed use. This research points out the complexity of adapting oneself to a chronic disease. Patient education is consequently necessary, as patients need to learn about the disease, their medication and self-management [11,12]. In Sweden the majority of asthmatics with mild to moderate asthma are cared for in primary health care. How primary health care in Sweden should best be organized in order to accomplish this is a current focus of attention, and as a consequence, asthma nurse practices (ANP) have been established [13,14]. Special features of an ANP are that the responsible staff member is a specially trained asthma nurse, that regular patient follow-ups are performed and that it is possible to book appointments. The asthma nurse informs patients about asthma prevention, inhalation techniques and medication, and gives patients written instructions regarding

Address reprint requests to M Lindberg, Unit for Research and Development in Primary Care, SE-595 30 Mjo¨lby, Sweden. E-mail: [email protected]

 2001 International Society for Quality in Health Care and Oxford University Press

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Table 1 Demographic data for the participating primary health care centres No. of patients Urban District diagnosed and PHCC population with asthma Urban rural ............................................................................................................ 1 8000 162 X 2 13 700 100 X 3 6000 148 X 4 11 500 313 X 5 8515 301 X 6 8500 211 X 7 9000 206 X 8 5642 101 X 9 9400 351 X 10 10 700 435 X 11 10 345 229 X PHCC, primary health care centres.

the medication and/or a written plan of action in case of deterioration. Spirometry, peak flow meters, peak expiratory flow (PEF) diaries and reversibility tests are used. The purpose of the present study was to indicate factors that can influence patient compliance with prescribed medication, and to elucidate important aspects in the care of patients with asthma from the patient’s point of view.

Methods Patients A sample of patients [18 years of age with asthma diagnoses (ICD 9 or ICD 10) were randomly selected (by the drawing of lots) from diagnosis registers from 11 primary health care centres in a region in southern Sweden, as shown in Table 1. Seventy-seven patients were asked to participate in the study. Five refused participation. Three did not turn up for the appointment. Four had moved from the area, and it was not possible to reach an additional two. A total of 63 patients participated in the study; demographic data are shown in Table 2. Design We used semi-structured interviews with closed and openended questions (see Appendix). An information letter from the Unit for Research and Development in Primary Care was sent to the patients. It contained information about the purpose of the investigation and emphasized that participation was voluntary and that confidentiality would be guaranteed. The first author then contacted the patients by telephone and asked if they would like to participate in the study. If they agreed to participate, an appointment was arranged. In

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some cases the interview took place at the patient’s home, and in others in a secluded room at a primary health care unit. Efforts were made to create a relaxed interview situation, and the patients were asked to set aside one and a half to two hours for the interview. The first author conducted all interviews. During the interview, the interviewer wrote down the information, received from the patient on a special form, with the aim of producing a verbatim transcription. If, during the course of the interview, she felt unsure about what the patient had said, she informed the patient that she was going to read her notes out loud so that the patient could confirm or correct what was written. The purpose was to assure that the notes reflected what the patient intended to say. The Local Ethics Committee of the Faculty of Health Sciences, Linko¨ping University, Sweden, approved the study. Analysis We performed a backward, stepwise, binary logistic regression analysis. The statistical calculations were performed with StatView 5.0. The aim was to find independent variables that significantly explained our dependent variable, taking medication regularly as prescribed. We started analysing the 15 independent variables (see Table 4) by means of a correlation matrix with the aim of searching for multicollinearity that could have an undue influence on the regression analysis. The highest absolute correlation between the independent variables was 0.54, and therefore multicollinearity would not be expected to cause any problem. The narrative data was entered into the computer program FileMaker Pro 4.0. The author re-read all interviews and looked for frequently occurring patient opinions, and then performed a content analysis of the information that had been obtained in the open-ended questions in the interviews [15,16]. The following expressions were chosen for coding the interview material: anxiety, information/education, asthma check-up, easy access to care, continuity and competence of the staff, security and appointments. These expressions were selected based on the question to which the author was attempting to find an answer; what aspects of health care are important to patients with asthma? The most common patient opinions resulting from these expressions are described and quantified in the results section of the article and patient quotations are used for purposes of illustration. The aim was to identify and quantify important aspects of the care.

Results All 63 patients answered the closed questions during the interviews. In the material included in the study there were five patients for whom medication on a regular basis was not prescribed, and one patient who reported taking medication on a regular basis without a prescription. These six patients were excluded from the correlation matrix and the logistic regression analysis. The remaining 57 patients all had prescriptions for daily medication with corticosteroids,

Asthma care and medication compliance

Table 2 Demographic data for all patients that participated in the study (n=63) and in the logistic regression analysis (n=57) Gender Female Male Age (years) 20–40 41–65 66–85 mean (min–max) Length of time had airway problems (years) 1–15 16–35 36–50 51–70 mean (min–max) Family history Asthma or/and allergy Self reported prescribed asthma medication (Prescribed asthma medication in medical record) Short acting inhaled 2-agonist Long acting inhaled 2-agonist Inhaled corticosteroid Inhaled ipratropium Inhaled sodium cromoglycate Peroral steriod p.r.n.

ipratropium or sodium cromoglycate according to their records, and 55 had a prescription for a 2 agonist (Table 2). Twenty-four of the 57 patients stated in the interviews that they did not take the medication regularly as prescribed. Thirty-eight had made emergency visits during the last 2-year period according to their records or their own statements. Thirty-two said that they did not automatically receive appointments for asthma check-ups. Raw data are shown in Table 3. After the last step in the backward, stepwise, binary logistic regression the following five variables were chosen related to the patients’ reports on their compliance to prescribed medication: age, gender, length of time with airway problems, whether the staff listened and took into account the patient’s views concerning his/her asthma, and whether the patient had received information and education about asthma (Table 4). The results show that females tended to follow their prescriptions better than males. Increasing age, feeling that the staff listened and took their views about their asthma into account, and having received information and education about asthma tended to increase the odds of taking medication as prescribed. Having had airway problems for increasing periods of time tended to decrease the odds of taking medication as prescribed. In the following section frequently occurring patient opinions are described. In addition, the formulation of the questions is presented, as are the numbers of responders and the

n = 63 46 17

n = 57 43 14

22 22 19 52 (20–85)

17 21 19 54 (20–85)

33 19 5 6 20 (1–70)

30 17 4 6 21 (1–70)

38

35

60 (59) 15 (17) 55 (54) 11 (11) 2 (2) 3 (3)

54 15 52 11 2 3

numbers of patients who expressed these opinions. The substance of the quotations presented for illustration is rather typical for those in the study group who responded this way. In the 63 interviews conducted, we found anxiety on the part of the subjects with respect to their asthma medication. Subjects were asked, ‘Have you reflected over how your asthma medication may affect you in the future?’ In this section 56 patients (39 females and 17 males) gave their opinions, of which 38 patients expressed some kind of anxiety about side effects (27 females and 11 males). ‘Cortisone can cause osteoporosis. I believe that’s why I have pain in my left leg. I’ve used so much cortisone in my life.’ ‘I’m mainly thinking about my kids, it can affect their growth. I’m not particularly worried about myself, although I do wonder if I take too little medication and what consequences this will have when I’m older.’ ‘I don’t really believe in the medication, and then I think about side effects. I’m sceptical about all medications, and I’ve heard it can be dangerous to combine asthma medication with other drugs.’ Sixty-two patients gave their opinions when asked, ‘Have you received information and education about asthma?’ Thirtyeight patients (27 females and 11 males) stated that they felt they lacked information and knowledge about asthma.

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Table 3 Raw data for the independent variables split by taking medication as prescribed or not, shown as number if not otherwise stated Not taking medicine Taking medicine Independent variable n = 24 n = 33 P value1 ............................................................................................................................................................................................................................. Age mean (min–max) Female gender Male gender Acute care in the last 2 years Check-up visits at health care centre Inhalation technique checked in past 12 months Informed about diagnosis Length of time with airway problems, years mean (min–max) Experienced factors Problems or side effects from medication Good knowledge about medication Worry that medication will affect the patient in the future That the medication is easy to use That the staff listen and take the patients views about asthma into account That the diseases is actively followed up That a health care worker is responsible for the patient and his/her asthma That the patient received information and education about the disease Self reported medication Short acting inhaled 2 agonist Long acting inhaled 2 agonist Inhaled corticosteroid Inhaled ipratropium Inhaled sodium cromoglycate

46 (20–77) 15 9 17 8 6 18 21 (1–66)

60 (25–85) 28 5 21 17 15 33 20 (2–70)

0.003

9 12 16 21

11 18 17 29

0.784 0.792 0.289 ≈1

13 8

27 10

0.039 ≈1

9

19

0.182

6

18

0.032

23 3 20 4 0

31 12 32 7 2

≈1 0.067 0.151 0.745 0.504

0.067 0.777 0.190 0.166 0.004 0.836

1

P values calculated with t-test (two-sided) when mean values are present and Fisher’s exact test (two-sided) otherwise.

‘I love animals, but I was forced to get rid of my cat, I want to know more. Can I ever have a house pet again? My doctor told me I couldn’t even have a goldfish. I really miss having a pet. I feel uncertain, would it be possible for me to have a dog, for example? I feel there is a lack of information.’

My husband never understood; I was just supposed to be healthy.’

‘I want information, not least in order to get advice concerning the kids. What should you avoid, with the future in mind? I don’t know anything about asthma, and I have many questions that I’d like to get answers to.’

‘I think that in general everybody, relatives, people you work with, need more information, because asthma is increasing in the community.’

Fifty-eight gave their opinions when asked, ‘Do you think it’s important that your relatives get information about asthma?’ Fifty-five subjects (42 females and 13 males) stated that it was important that relatives got information about the disease and its treatment. It also became obvious that more information is needed in the community, such as in schools and workplaces. ‘Nobody believes that you’re as sick as you are. It would be very good if relatives got information, mine never have.

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‘More information is needed. My boyfriend has no understanding of what I go through with my asthma. It’s very important!’

The last question was, ‘Now to summarize, what do you think of the care, and is there anything you want to add?’. In this section 62 patients (45 females and 17 males) gave their opinions. Out of these 51 (40 females and 11 males) gave, from a patient point of view, important ideas concerning their care. Including the value of regular asthma check-ups and having easy access to care, the importance of continuity and competence on the part of the staff, and a feeling of security concerning their care. They also felt that the appointments were stressful.


Table 4 Independent variables included in the logistic regression are shown; the independent variables’ P values are shown for the full logistic regression model; odds ratio and confidence interval are shown for the variables that resulted in significant P values in the final logistic regression model P value, final Independent variables Odds ratio 95% CI model ............................................................................................................................................................................................................................. Constant 0.00128 Age (year) 1.083 1.029–1.141 0.0024 Gender 7.806 1.391–43.783 0.0195 Length of time with airway problems (years) 0.953 0.911–0.998 0.0407 That the staff listen and take the patient’s views about asthma into account 7.744 1.498–40.016 0.0146 That the patient received information and education about the disease 5.484 1.176–25.575 0.0303 ............................................................................................................................................................................................................................. The following independent variables were not included in the final P-value, full model: model Acute care in last 2 year 0.0986 Check-up visits at health care centre 0.8446 Inhalation technique checked in past 12 months 0.2439 Informed about diagnosis 0.9951 Problems or side effects from medication 0.0864 Good knowledge about medication 0.6835 Worry that medication will affect the patient in the future 0.3112 That the medication is easy to use 0.7258 That the disease is actively followed up 0.4641 That a health care worker is responsible for the patient and his/her asthma 0.3429 Analysis based on data from the 57 patients in the sample taking a daily anti-asthmatic.

‘More regular visits. They should be responsible for giving you follow-up appointments. Otherwise it’s easy to forget. And then it’s very likely you’ll have to go in on an emergency basis instead. This could be prevented if you were given appointments.’

when I need to talk about my asthma, I’ve never had anyone like that and I’d like to.’

‘As an asthma patient I’d like to be given follow-up appointments for my asthma automatically. Simply so I can get information and check my asthma. I also want information about new medication and I’d like to get tested for allergies again, it’s been so long since that was done. I lack information, I want to know what’s happening, all the latest information.’

‘There’s a lot of pressure in health care right now that wasn’t there before. The staff haven’t got the time. There aren’t enough staff members. It would be good if they got asthma patients together in groups so that we could do some kind of group-work together. A lot of people with asthma probably have a hard time. We can’t go out to an ordinary cafe´ because of the smoking, we’re socially out of it. Nobody thinks about the fact that we have asthma.’

‘Asthma is a whole spectrum of conditions where the disease is even affected by things like anxiety and worry. This doesn’t improve the situation, it’s a tough illness to have. You want to be treated with understanding and you want the staff to consider the fact that you’re unstable. There has to be someplace nearby where you can get treatment when you need emergency care. The fact that you can’t get treatment here at the health care centre makes you feel insecure and that makes your asthma worse because of the anxiety and worry. Over the long run it must be cheaper if I don’t have to get emergency care so often, and then there won’t be so much pressure on the emergency department. It would be really good if there was a member of the health care staff that I could call

‘I’d like to have continual follow-up visits for my asthma to keep my illness under control, and I’d like to be seen by the same staff person who has training in asthma.’

Discussion The present study identifies five variables that may help explain why asthmatics do not use prescribed medication: age, gender, length of time with airway problems, whether the staff listen and take into account the patient’s own views about asthma and whether the patient has received information and education about asthma. This knowledge can be helpful to professionals who are in charge of the health care of asthmatics. Other chronic disease research

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has shown that non-compliance in adults is not dependent on factors such as age and gender [17]. In our study the opposite results were obtained; increasing age and female gender were significant factors with respect to taking the prescribed medication. Conversely, increasing the length of time with airway problems decreased the odds of taking the medication as prescribed, which may have occurred because these asthmatics had adjusted to the disease and it had become a part of their life situation. Each individual creates strategies for contending with his/her life situation. Earlier research has shown that with time, people with asthma or allergies tend to dissociate themselves from the prescribed treatment, and that long-term medication use threatens one’s identity [10]. The majority of subjects in our study was female; 46 out of 63. That may be partly because there are more female than male adult asthma sufferers in Sweden [18]. Official statistics present a higher sales prescription on anti-asthmatics drugs for adult females in all ages except for the oldest ages (>70 years old), this fact supports that the female predominance is rather typical [19]. The feeling that the staff are supportive and listen to the patient’s opinions has also been shown to be important. A patient-centred model of doctor–patient interaction was evaluated and was related to significantly higher compliance with prescribed medication. In that study it was found to be of importance for the physician to initiate discussion with an explicit request for the patient’s opinions [20]. It has also been shown that patients themselves are passive and rarely give their opinions or initiate discussion about their treatment [21]. The goal of asthma care is to promote patient participation in their care [22] and to create a partnership between the staff and the patient. The significance of listening to and respecting patient opinions is important when our ambition is to achieve concordance and thereby hopefully compliance [23,24]. To be successful in improving a patient’s compliance regarding taking prescribed medication, the staff must respect the patient’s point of view and promote open communication [25]. In the present study, whether the patient felt that she/ he had received information and education about their asthma was shown to be of great value with respect to self-reported compliance with prescribed medication. Several other studies have highlighted the importance of patient education in relation to disease outcomes, for example emergency visits [14,26–29]. Another chronic disease for which similar effects of patient education have been found is hypertension [30]. Adams et al. [31] found that ‘acceptors’ (i.e. persons who accepted that they had asthma) were compliant with their medication, they were aware that asthma is a chronic disease and of prophylactic medication effect. They had a greater knowledge and understanding of asthma and the medication in comparison with the ‘deniers’ (i.e. persons who claimed that they did not have asthma) or the ‘distancers’ (i.e. persons who admitted at times that they had ‘slight’ or ‘not proper’ asthma). The two last-mentioned groups reported non-compliance according to the prophylactic medication.

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Our study was concerned with intentional medical noncompliance, i.e. the patients know what has been prescribed but for some reason do not comply with what has been prescribed [32]. A deficiency in our study could be that compliance or non-compliance was self-reported. However, alternative methods such as a medication count, weighing of inhaled canisters, medication monitoring and drug level monitoring also have their weaknesses [6]. In order to assure validity and reliability in the present study we checked that the information given by patients was in agreement with the information in their medical records, that the interviewer was unknown to the patients, and that they were guaranteed anonymity. Another weakness in our study is that we may have missed patients who were unintentional non-compliers. On the other hand, 42% of the patients in our study stated that they were non-compliers, which is in close agreement with earlier reports [8,33]. It should be mentioned that a limitation in the present study could have been that the first author conducted all the semi-structured interviews, eliciting information on medication compliance as well as the predictors in a non-blinded manner, and that the patients could have been led to certain answers. However, the interviewer was aware of that bias risk during the interviews and efforts were made to ensure that this should not occur. The method we used for analysis of the narrative data has been discussed [34]. Our opinion is that it is a useful method for acquiring information. Important aspects from the patient’s point of view were expressed in the interviews, such as anxiety about asthma medication and stressful appointments, and their own lack of information and knowledge about the disease as well as that of relatives, colleagues and school personnel. It was also clear that the need for security concerning the care was important, and this included regular asthma check-ups, easy access to care, continuity and competence on the part of the health care staff. Fallsberg reported that asthma patients search for security with respect to their medication, and that the health care staff serve as consultants [35]. One explanation as to why ANP in Sweden have reported good outcomes compared with traditional care for asthma patients could be that with the exception of presentation of information on asthma to schools and workplaces, most of the factors mentioned above are taken into consideration in an ANP [13,14,36]. One-to-one counselling appointments are used in an ANP with the goal of caring for each patient according to their knowledge about the disease and the medication, and focusing on having the patient feel she/he receives as much time as necessary and feel confident in the nurse providing the care [14]. In future research it would be interesting to look at nurse–patient communication in the clinical situation at an ANP. Earlier research concerning physician–patient appointments has shown the importance of patient participation in the clinical conversation, which results in increased levels of patient satisfaction and compliance [37]. Knowledge of patient views concerning asthma care is of interest and importance not only to health care professionals but also to health care planners.


Conclusion The present study identified five important factors regarding self-reported compliance with prescribed medication in patients with asthma: age, gender, length of time with airway problems, whether the staff listen and take into account the patient’s views concerning his/her asthma, and whether the patient has received information and education concerning asthma. Important aspects of the care were expressed from the patient’s point of view, and these are in accord with how an ANP functions in Sweden.

Acknowledgements We wish to thank Olle Eriksson, Department of Mathematics, University of Linko¨ping, for statistical advice, and the Health Research Council of Southeastern Sweden (FORSS) for financial support.

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care of bronchial asthma patients treated at the primary health care level in o¨stergo¨tland (in Swedish). FoU report, 1996. 14. Lindberg M, Ahlner J, Mo¨ller M, Ekstro¨m T. Asthma Nurse Practice – a resource-effective approach in asthma management. Respir Med 1999; 93: 584–588. 15. Polit DF, Hungler BP. Nursing Research. Principles and Methods, 6th edn. New York: Lippincott Williams & Wilkins, 1999, pp. 1562–1568. 16. Patton MQ. Qualitative Evaluation and Research Methods, 2nd edn. California: Sage Publications, Inc, 1990. 17. Hayes-Baulista DE. Modifying the treatment: patient compliance, patient control and medical care. Soc Sci Med 1976; 10: 233–238. 18. Formgren H. The Scope of Allergy and Other Types of Hypersensitivity. A Compilation of Scientific Knowledge (in Swedish). Stockholm: National Institute of Public Health, 1994. 19. Svensk La¨kemedelsstatistik 1999. Swedish Drug Sales Statistics 1999 (in Swedish). Stockholm, Sweden: National Corporation of Swedish Pharmacies, 2000. 20. Stewart MA. What is a successful doctor–patient interview? A study of interactions and outcomes. Soc Sci Med 1984; 19: 167–175. 21. Makoul G, Arntson P, Schofield T. Health promotion in primary care: physician–patient communication and decision making about prescription medications. Soc Sci Med 1995; 41: 1241–1254. 22. Hogue C. Nursing and Compliance. Baltimore: Johns Hopkins University Press, 1979, pp. 247–259. 23. Royal Pharmaceutical Society of Great Britain. From Compliance to Concordance: Towards Shared Goals in Medicine Taking. London: RPS, 1997. 24. Dolan Mullen P. Compliance becomes concordance, Making a change in terminology produces a change in behaviour. Br Med J 1997; 314: 691–692. 25. Stevenson F, Gerrett D, Rivers P, Wallace G. GPs recognition of, and response to, influences on patients medicine taking: the implications for communication. Fam Pract 2000; 17: 119–123. 26. Bolton MB, Tilley BC, Kuder J et al. The cost and effectiveness of an education program for adults who have asthma. J Gen Intern Med 1991; 6: 401–407. 27. Charlton I. An evaluation of a nurse-run asthma clinic in general practice using an attitudes and morbidity questionnaire. Fam Pract 1992; 9: 154–160. 28. George M, O’Dowd LC, Martin I et al. A comprehensive educational program improves clinical outcome measures in inner-city patients with asthma. Arch Intern Med 1999; 159: 1710–1716. 29. FritzGerald J, Turner MO. Delivering asthma education to special high risk groups. Patient Education and Counselling 1997; 32: 77–86. 30. Grueninger U. Arterial hypertension: lessons from patient education. In Assal JP, Golay A, Visser AP (eds), New Trends in Patient Education. Amsterdam: Elsevier Science BV 1995, pp. 37–55.

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31. Adams S, Pill R, Jones A. Medication, chronic illness and identity: the perspective of people with asthma. Soc Sci Med 1997. 45: 189–201. 32. Cochrane GM, Horne R, Chanez P. Compliance in asthma. Respir Med 1999. 93: 763–769. 33. Cochrane GM. Compliance in asthma: a European perspective. Eur Respir Rev 1995. 5: 116–119. 34. Haggarty L. What is . . . content analysis? Med Teach 1996; 18: 99–101. 35. Fallsberg M. Reflections on Medicines and Medication. A Qualitative Analysis among People on Long-term Drug Regimes. Medical Dissertation, Linko¨ping University, 1991. 36. Lindberg M, Ahlner J, Ekstro¨m T et al. Asthma Nurse Practice improves outcomes and reduces costs in primary health care. Scand J Caring Sci, in press. 37. Wiggington Cecil D, Killeen I. Control, compliance, and satisfaction in the family practice encounter. Clinical Res Methods 1997; 29: 653–657.

11. During the past 12 months has your inhalation technique been checked by a health care professional to see that it is correct?

Choice of doctor/health care unit/level 12. Where do you think you get the best care? (Why do you think so?) 13. Have you received information about your choices regarding care such as choice of family doctor, health care centre, hospital? 14. Have you made any active choice yourself? 15. If you have, for what reason(s) did you make that choice?

Accessibility 16. Do you get an appointment at your health care centre/hospital when you need one? 17. Are the staff at the health care centre/hospital easy to reach by telephone?

Emergency care/treatment 18. Have you gone to your health care centre on an emergency basis during the past 2 years because of your respiratory problems?

Appendix

If yes, what was your visit like? (Do the staff treat you with sensitivity and empathy? Do you have confidence in the doctors you see?)

Survey questions

19. Have you gone to the emergency department during the past 2 years because of your respiratory problems?

Note: the following represents the sections and text of the questions in the study survey. Questions were provided with ‘Yes’/‘No’ answer boxes, where appropriate. Each answer field also included an invitation and generous lined space for respondents’ comments.


Introduction


1. How long have you had your respiratory problems (in years and months)? 2. When did your doctor tell you that you have asthma? 3. Who was the doctor who informed you that you have asthma?

Medication 4. Are you prescribed medications to take regularly for your respiratory problems? If yes, do you take them as prescribed? What medications are prescribed for you? Bricanyl/Ventoline? Serevent? Atrovent? Pulmicort/Becotide? Lomudal? Mucolytic medication? Other allergy medication? If yes, what? If yes to any of the above, what dosage and how often? 5. How do you feel about your medications? Do you have any side effects? 6. Do you feel you have good knowledge about your asthma medications? Who gave you this information? 7. Does the order in which you take your asthma medications make any difference? (Who gave you this information?) 8. Have you reflected over how your asthma medications can affect you in the future? 9. Are your asthma medications easy to use? 10. Is your asthma medication easy to take with you? (How would you like it to be?)

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20. Have you gone to the hospital on an emergency basis during the past 2 years because of your respiratory problems?

Collaboration with different doctors/care levels/ units 21. Have you been referred to another department by your doctor because of your respiratory problems? If yes, how did you experience this? (Was there a long waiting period, did the staff expect you, did the doctor with whom you had the consultation seem well-informed about your problems?) 22. Do you think it would be good if your regular doctor got information from other departments if you go there for your respiratory problems? 23. Do you have any idea about whether this is done now? 24. Do you feel like you are ‘tossed’ back and forth between different care levels/units? 25. Do you know if there is someone who has primary responsibility for you? 26. Do you get regular appointments for check-ups at the health care centre/hospital for your respiratory problems? 27. Were you previously treated for your respiratory problems by paediatrics? If yes, how did you experience the transition to adult health care?

Is asthma taken seriously? 28. Do you feel that the health care sector actively follows up on how you are doing with respect to your asthma? (For example, treatment results, contact with the nurse.)


29. Do you think the staff/doctor pay too little attention to your asthma?

Assessment of the care 30. Do you generally feel healthy, relieved, improved after a visit to a health care unit? (security-insecurity) 31. Do you think the doctor/staff listen to you and take into account your own views about your asthma?

33. Do you have any idea about how easy it is to get a subsidy for necessary home sanitization? 34. Do you think it’s important that your relatives get information about asthma?

What does asthma involve?

Information about asthma

35. Do you think your problems affect those closest to you? 36. Do you think the condition of your windpipe/bronchus can improve? 37. Now, to summarize, what do you think of the care, and is there anything you want to add?

32. Have you received information and education about asthma? (Have you understood it? Is the information sufficient? Do you want more information?)

Accepted for publication 1 June 2001

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