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Comparison of hospital and home intravenous antibiotic therapy in adults with cystic fibrosis
Glenda Esmond Lecturer Respiratory Nursing City University (St Bartholomew School of Nursing & Midwifery)
Abstract: a summary of a research project that was undertaken at Barts and The London NHS Trust which compared hospital and home intravenous antibiotic therapy in adults with cystic fibrosis. A disease specific questionnaire was completed by 30 patients. In four quality of life domains there were different outcomes between the two groups and four domains with similar results. Three figures, three references.
Contents: Introduction. Research study. Measuring quality of life. Clinical outcomes. Quality of life outcomes. Recommendations. References
Introduction
Cystic fibrosis (CF) is the most common life threatening genetic disease affecting approximately 1 in 2,500 live births in the UK. The estimated cystic fibrosis population in the United Kingdom is 7,500, (1) with the proportion and number of adults increasing due to the improved survival, which is currently 31 years. Cystic fibrosis care is provided by specialist regional cystic fibrosis centres, as it has been demonstrated that through receiving more intensive interventions and being cared for by a multi-professional team experienced and expert in the complexities of cystic fibrosis, there is increased survival. (1) Barts and The London (BLT) provides regional cystic fibrosis care, the adult center is based at the London Chest Hospital.
The main cause of morbidity and mortality in cystic fibrosis is bacterial lung infections. A background of chronic lung sepsis is punctuated at increasingly frequent intervals by acute infective respiratory exacerbation. Treatment of acute respiratory exacerbation requires intravenous antibiotics predominantly against Pseudomonas bacterial infections. (2) Traditionally patients would be admitted to hospital to complete courses of intravenous antibiotics for acute respiratory exacerbation, necessitating a 14 day admission, causing disruption to the patient's lifestyle. The concept of home intravenous therapy for acute respiratory exacerbation is rapidly becoming popular and is well established within BLT, allowing for greater patient choice.
Patients who express a desire to self-administer intravenous antibiotics are assessed for motivation, home stability and practical ability by the clinical nurse specialists for cystic fibrosis. Patients who have been assessed competent, based on assessment criteria, and confident, at self administering intravenous antibiotic therapy have the flexibility to choose where they have their intravenous antibiotic therapy. Figure 1, shows the framework that assists cystic fibrosis patients to determine the extent to which they want to self-manage their acute respiratory exacerbation, thereby allowing patients to choose where they undertake their care.
Figure 1. Framework to assist patient to deterimine self-management of acute respiratory infection treated with intravenous antibiotics.
With increasing numbers of adult cystic fibrosis patients due to increased survival and the increasing popularity of home therapy in response to economic pressures and patient choice, it was felt necessary to compare hospital and home intravenous antibiotic therapy to determine if the following aims of home intravenous therapy were being achieved :
To reduce the number of days spent in hospital and increase quality of life.
To allow patients to make choices about their care without affecting the benefit from each course of treatment.
With the above aims in mind a study was undertaken to compare home intravenous therapy with conventional hospital intravenous therapy and quality of life. The study also aimed to inform service development planning so appropriate allocation of resources, human and financial, is based on evidence, ensuring outcomes are optimised for treatment in hospital and at home.
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Research Study
The patients were recruited into the study after they had chosen, in consultation with the cystic fibrosis team, where intravenous antibiotic treatment would take place. As the patients were allowed to make choices with regard to their treatment, no attempt was made to standardise, hence the use of a quasi-experimental design approach to the study. Thirty adult cystic fibrosis patients (15 hospital and 15 home) were recruited to the study, 6 females and 9 males in the hospital group and 9 females and 6 males in the home group which was on average four years older. A pre and post test was used to measure clinical outcomes of Forced Expiratory Volume in one second (FEV1), Forced Vital Capacity (FVC), oxygen saturations (SaO2), Body Mass Index (BMI) and quality of life using the Cystic Fibrosis Quality of Life (CFQoL) questionnaire.
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Measuring quality of life
The questionnaire, a disease specific questionnaire has been validated and tested for reliability using adolescents and adults with cystic fibrosis. (3) It consists of 52 items across nine domains of quality of life, which are physical functioning, social functioning, treatment issues, chest symptoms, emotional responses, future concerns, interpersonal relationships, body image and career issues. Responses to the questionnaire are measured by a six point Likert scale which are then transformed into values of between 0 and 100. Transformed scores of less than 50 represent negative scores, suggesting that the individuals may be experiencing difficulties within that particular domain.
Although the questionnaire appears to be comprehensive and is disease specific, the limitation to this type of measure is that the questions are very structured, allowing no room for expansion. This could have been overcome through supplementing the questionnaire by the addition of in depth interviews using a sample of patients. The use of unstructured interviews using an interview guide focusing on quality of life issues would have allowed the patient to talk freely.
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Clinical Outcomes
Home intravenous antibiotic therapy was found to be safe as there were no drug reactions or complications of intravenous therapy (i.e. sepsis, line damage, tissue infiltration), observed in either the home or hospital groups. There were no deaths, indicating that the selection criteria was able to identify if the patients were in the terminal stages of their disease. When the groups were compared for clinical outcomes the hospital group showed greater improvement in Forced Vital Capacity, although there were no statistically significant differences for the other clinical outcomes (FEV1, SaO2 and BMI). Lung function improved more in the hospital group, suggesting that acute respiratory exacerbations were not as effectively treated at home.
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Quality of Life Outcomes
The questionnaire was easy to administer as it was a self completion questionnaire, although it did take about twenty minutes for patients to complete, rather than the ten minutes identified by Gee et al. (3) What was not possible to determine was the interpretation of the questions by individuals as there was no way of checking this. Although it was identified that the quality of life questionnaire could be intrusive on the patient's lifestyle and feelings, there did not appear to be any distress caused to any of the patients. This was not too surprising as all the issues raised in the questionnaire would have been previously discussed, as this group of patients are fully aware of their prognosis and effects that cystic fibrosis can have.
Compared to the pre quality of life domain scores (figure 2), there was an overall reduction in the negative scores.
There were no statistically differences in quality of life when the hospital and home groups were compared, although the questionnaire was able to detect transient changes in health status, demonstrating improvement in a greater number of quality of life domains for the home group during a course of intravenous antibiotics (figure 3).
The hospital group had higher negative scores for the quality of life domains of physical functioning, social functioning, treatment issues, emotional responses and career concerns, whereas the home group had higher negative scores for future concerns, interpersonal relationships and body image. In the home group there were improvements in all nine quality of life domains, with statistically significant changes in the domains of physical functioning, chest symptoms, emotional responses, interpersonal relationships and career concerns, but the domains of social functioning, treatment concerns, future concerns and body image were not statistically significant. In the hospital group there were improvements in the quality of life domains of physical functioning, social functioning, treatment concerns, chest symptoms, emotional responses, future concerns, body image and career concerns, with statistically significant changes in the domains of chest symptoms and future concerns, but the domains of physical functioning, social functioning, emotional responses, body image and career concerns were not statistically significant. The quality of life domain of interpersonal relationships did not improve in the hospital group, but the result was not statistically significant. Although five of the quality of life domains showed different outcomes for the two groups, there were four quality of life domains that demonstrated similar results in both the home and hospital groups. The only quality of life domain that showed improvement and statistical significance in both groups was chest symptoms. The quality of life domains of social functioning, treatment concerns and body image showed improvement in both groups, but the result was not statistically significant.
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Recommendations
Patient's right to choose where they receive intravenous antibiotic therapy should continue to be supported.
Further research is required to determine what factors cause the difference in clinical outcomes.
The CFQoL questionnaire is a measure that appears suitable to detect changes in quality of life of cystic fibrosis adults, although future research using it would benefit from the addition of unstructured interviews.
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Conclusion
If the patient's right to choose where they receive treatment is to be supported, further research is required to determine the reasons for home care being less clinically effective in treating acute respiratory exacerbations in cystic fibrosis patients.
References
1. Cystic Fibrosis Trust Clinical Standards and Accreditation Group. Standards for the Clinical Care of Children and Adults with Cystic Fibrosis in the UK. Bromley, Cystic Fibrosis Trust, 2001.
2. Cystic Fibrosis Trust's Control of Infection Group. Report of the Cystic Fibrosis Trust Antibiotic Group. Bromley, Cystic Fibrosis Trust, 2001.
3. Gee L, Abbott J, Conway SP et al. Development of a disease specific health related quality of life measure for adults and adolescents with cystic fibrosis. Thorax,2000:55 ;946-54.
Acknowledgements
I would like to thank the Clinical Nurse Specialists for Cystic Fibrosis for their involvement in the data collection for this study.
Progress in Practice: 2002.
Copyright: Progress in Practice, Royal Hospitals NHS Trust
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