- Email: [email protected]
ePS02.4 Perceptions of end of life care in adult patients with cystic fibrosis
Oral Presentations / Journal of Cystic Fibrosis 15 (2016) S1–S50
clinic at Hannover Medical School were examined for anomalous ion conductance of their respiratory epithelium by nasal transepithelial potential difference (NPD) measurements. Results: NPD tracings were normal for 26 subjects. The remaining six subjects presented anomalous NPD tracings. Pathological Sermet scores led to the diagnosis of CF in one subject and of CFTR-related disorder in two subjects. The fourth subject was a 62-year old female showed strongly fluctuating potentials on repeated measurements which probably reflected large temporal variations of open ENaC and CFTR channels. Two subjects did not show any hyperpolarization upon exposure to amiloride consistent with pseudohypoaldosteronism. Conclusion: This NPD investigation uncovered an unexpectedly large portion of NCFBE individuals with anomalous NPD. Adult chest physicians may care for numerous cases with undiagnosed ENaC or CFTR disorder. Screening by NPD should detect these subjects who could then immediately benefit from the established standards of CF care.
ePS02. The CF team in development ePS02.1 Advanced care planning and thinking ahead in cystic fibrosis: a quality improvement pilot project for adults with cystic fibrosis R.S. Meharry1 , S. Patel1 , G. MacGregor1 . 1 Queen Elizabeth University Hospital – NHS Greater Glasgow and Clyde, Respiratory Department – Cystic Fibrosis Unit, Glasgow, United Kingdom
S39
unwell patients. The hospital in the home (HITH) service for CF patients at The Royal Children’s Hospital has been undergoing a series of changes to enable hospital level care to be provided in the home. The purpose of this study was to evaluate the effect of these changes on service utilisation and time to transfer. Methods: A series of changes to the CF HITH service were implemented last year including: increased physiotherapy service (face-to-face or telehealth one to two times daily), home spirometry, increased HITH medical involvement, introduction of a day seven review, introduction of a direct HITH admission pathway, and streamlining of the transfer processes. Effectiveness was evaluated primarily through an audit of hospitalisations for CF patients. Results: The number of admissions utilising HITH increased from 39% prior to service changes to 50%, 52% and 54% over three successive quarters after changes began. Similarly, the average time to HITH transfer reduced from 6.2 days to 5.4, 5.3 and 4.0 days over three successive quarters. Conclusion: Following changes to the HITH service to better emulate a hospital level service there has been an increase in the number of patients who were able to have their admission conducted through HITH and patients transferred to HITH earlier in their admission. Next we will evaluate consumer satisfaction with this improved service. ePS02.3 The future of CF care: identifying trainees’ attitudes and potential barriers to becoming a CF specialist D. Higbee1 , C. Addy2 , D. Nazareth3 . 1 St Thomas’ Hospital, London, United Kingdom; 2 Queen’s University, Centre for Infection and Immunity, Belfast, United Kingdom; 3 Bristol Royal Infirmary, Adult CF Unit, Bristol, United Kingdom
Objectives: 1. Assess cystic fibrosis (CF) healthcare provider (HCP) and adult patient attitudes to advance care planning (ACP) in a UK based CF centre. 2. Improve CF multidisciplinary team (MDT) ACP practices through training from the palliative care team (PCT). 3. Commence the ACP process with higher risk adult CF patients. Methods: 1. In response to research that a minority of adults with CF formulate an ACP with their clinicians, the CF MDT was surveyed to assess current ACP practices. 2. The hospital PCT provided training for the CF MDT. 3. The ACP project was piloted with patients demonstrating advanced disease: FEV1 <40% predicted (mean 30% predicted), referred/listed for lung transplant (6/13) or referred to the PCT for symptom management (9/13). 4. Two generic ACP guides were used to facilitate ACP discussions over several clinical sessions. 5. Patients were surveyed about their ACP experience. Results: CF HCP respondents (n = 14) reported commencing ACP typically when the patient has advanced disease or is dying but 61.5% felt ACP discussions should be had multiple times in a variety of settings. 100% agreed that ACP is “useful”/“worthwhile” but “stressful”. Patients identified as higher risk (n = 13): 6 male, mean age 35 (25–55). 1 died prior to completing ACP. Post ACP feedback demonstrates ACP well received by patients. Qualitative data from patient interviews and postACP survey will be updated for conference proceedings. Conclusion: This project demonstrated that CF HCP ACP practices and comfort could be improved. In response we are partnering with patients and the CF team in designing and piloting a new ACP document specifically for adults with CF in the UK.
Reference(s) [1] Burgel et al. ERJ 2015, 46(1), 133–141.
ePS02.2 Providing hospital level care in the home
ePS02.4 Perceptions of end of life care in adult patients with cystic fibrosis
F.C. Moran1 , S. Parsons2 , J. Glazner3 . 1 The Royal Children’s Hospital, Physiotherapy Department, Parkville, Australia; 2 The Royal Children’s Hospital, RCH@Home, Parkville, Australia; 3 The Royal Children’s Hospital, Department of Respiratory Medicine, Parkville, Australia
F. Cathcart1 , H. Parrott1 , J. Ross1 , A.M. Jones1 , N.J. Simmonds1,2 . 1 Royal Brompton Hospital, London, United Kingdom; 2 Imperial College London, London, United Kingdom
Objectives: Provision of inpatient level care in the home environment can be beneficial for both patients and their families (increased rest, reduced social disruption, ability to attend school, reduced risk of cross infection) and also for hospitals by making beds available for acutely
Introduction: With the cystic fibrosis (CF) population predicted to rise by 79.8% [1] in 10 years, over 180 specialist CF doctors may be needed to provide care and workforce planning needs to start now to ensure future provision. Current UK requirements for respiratory specialist training in CF are a 3-month CF attachment or 4 CF clinics and 1 multidisciplinary meeting. We aimed to ascertain Respiratory trainees’ attitudes towards a career in CF with a view to identifying barriers. Methods: An online questionnaire was distributed to a cross section (n = 40) of adult respiratory medicine speciality trainees across 8 UK training regions. Results: 75% were senior trainees in their final two years of training. 92% felt a speciality certificate examination alone was insufficient to work as a CF specialist. Only 53% had spent 1–4 months working in a CF centre. 80% of responders said their attachment wasn’t sufficient to be a specialist CF consultant; with 63% of trainees yet to work at a CF centre having to organise training themselves. 27% would consider a career in CF with 63% citing an exciting and challenging patient population as a reason. Of those not wishing to pursue CF as a speciality: 40% cited lack of exposure and 44% the perceived challenging patient population. Conclusions: Currently few trainees would consider a career in CF with lack of exposure being a barrier. The number of CF consultants must increase to meet the demands of a population rising in number and complexity and current training requirements require urgent review. UK and European CF specialists need to explore ways to increase training exposure to CF.
Objectives: End of life care (EOLC) in CF can be unique and complex. EOLC initiatives remain high on the healthcare agenda but the question of how best to put these into practice to enhance care and staff coping remains unanswered. The aim was to collate and understand the current qualitative evidence on perceptions of EOLC in CF and survey the
S40
Oral Presentations / Journal of Cystic Fibrosis 15 (2016) S1–S50
multidisciplinary team (MDT) in a large CF centre in the UK (n = 585, non-transplanted) to explore their experience and views (average 16 deaths/year over last 3 years). Methods: A qualitative systematic review using meta-ethnography was completed. A survey was devised using the key themes and questioned the MDT on areas such as managing EOLC, emotional demands and education. Results: Four studies were selected from the systematic review, identifying three key features of providing high quality EOLC; education, communication and coping strategies. 28 (80%) survey responses were collected from the MDT. Staff agreed or strongly agreed that they felt comfortable discussing EOLC (71%) and identifying patients approaching EOLC (82%). 21% of respondents did not feel they could cope with the emotional demands and would like to receive more training on topics including EOLC (52%) and difficult conversations (52%). 20 (72%) staff wanted to be offered more opportunity to reflect following the death of a patient. Conclusion: Despite the MDT having access to generic EOLC education, improved support and training for staff was a strong theme from both the systematic review and the survey. A CF targeted educational programme with regular structured reflection may better address continued training needs of the CF MDT. ePS02.5 Striving to improve the outpatient journey for adults with cystic fibrosis – a quality improvement project S. Talbot1 , H. Parrott1 , S. Madge1 , K. Gyi1 , A.M. Jones1 , N.J. Simmonds1 . 1 Royal Brompton Hospital, Department of Adult Cystic Fibrosis, London, United Kingdom
Methods: Using Lean Thinking Methodology, our team identified issues causing inefficiencies during clinics. In a team workshop with an external facilitator, clinic flow was analysed through flow mapping. Barriers to effective functioning were identified through root cause analysis, solutions formulated and responsibilities for implementation allocated to individual team members. The process was evaluated using a structured questionnaire. Results: We identified the following issues: ‘empty’ time, inconsistent clinic structure, information/results availability, difficulties with realtime within-team information sharing. The following strategies were employed: newsletters to families to emphasize importance of punctuality, formalised clinic structure, pre-clinic team briefing, communication board, debriefing with action plan and task allocation. Longterm improvements are ongoing. We evaluated questionnaires from 12 team members. Half of the team members reported that AR clinics improved immediately, 92% anticipated an improvement in the long term, 67% noticed an impact on ordinary clinics. Conclusions: Lean Thinking Methodology was successfully applied in a CF outpatient setting. Team members reported an improvement in AR clinics and ordinary clinics. ePS02.7 How accurate are members of the CF multi disciplinary team at predicting patient adherence to CF treatment? N. Rao1 , R. Collins2 , J. Watkinson1 , K. Ransom1 , L. Tomlinson1 . 1 University Hospital of South Manchester, Paediatrics, Manchester, United Kingdom; 2 University of Manchester, Manchester Medical School, Manchester, United Kingdom
Introduction: Significant waiting, inefficient processes and challenges in segregation led to reduced patient and MDT (multidisciplinary team) satisfaction in our cystic fibrosis clinics. An audit in May 2015 highlighted that 70% of patients were spending more than 75 minutes in the clinic from arrival to last consultation. In addition, up to 80% of patients were not attending at their allocated appointment times. Objective: A quality improvement (QI) project was implemented to reduce waiting times and the number of patients present in clinic for >75 minutes by 25% using PDSA (plan, do, study, act) cycles of change. Methods: Clinic data were collected and continually analysed via run charts from May 2015 including: duration of the pre-clinic meeting, waiting times, attendance times, total length of time spent in clinic and a survey of staff opinion. Cycles of change included: (1) Reducing pre clinic meeting duration, (2) Writing to patients (n = 585) to detail the project and request attendance at their allocated appointment time and (3) Updating the clinic booking template to increase appointment availability and improve attendance structure. Results: After implementation, there was a reduction in the pre clinic meeting from 45 minutes to a mean duration of 25 minutes by November. 67% (vs. 36%) of patients now attend clinic on time. Only 23% of patients are in clinic for >75 minutes. No breaches in the segregation process were observed. On re-survey the MDT were more positive about the clinic experience. Conclusions: As a large adult centre it is essential we strive to continuously improve our service and overcome challenges that may compromise the patient experience.
Objectives: To compare the accuracy of paediatric CF multidisciplinary teams perceived patient adherence to treatment with objective measures of adherence using GP prescription issue data. Methods: We conducted a multi method assessment of adherence at our paediatric CF clinic of 22 children (<18 years). Objective adherence was measured using GP repeat prescription orders which were compared with each patient’s expected medication consumption retrospectively over a specified three-month period between October and December 2014. 16 patients or their parents completed a questionnaire which assessed self-reported adherence to treatment. Each member of the MDT (Doctor, specialist nurse, physiotherapist and dietician) was asked to predict the percentage adherence to treatment for each patient in 4 ranges (<40%, 40–60%, 60–80%, >80%). Results: The predicted adherence by the MDT team correlated very poorly with actual measured adherence. The mean accuracy was 34% (27–45%). Surprisingly the study found that the team were more likely to underestimate compliance in up to a third of the cases. The mean objective adherence rate amongst our patients was low at 61.8% (27.7–94.6%). The mean subjective self reported adherence rate was 91.6% (74.7–100.0%). Nutritional supplements followed by respiratory medications were associated with the poorest adherence. Conclusion: This study demonstrated the difficulty is assessing patient adherence and the extent of the problem of adherence in a paediatric CF cohort A dedicated CF multidisciplinary is not very accurate at predicting patient adherence to treatment and more objective measures need to be implemented to assess adherence.
ePS02.6 Improving efficiency in an outpatient setting – Experience from a paediatric CF centre in East London
ePS02.8 Unscheduled contacts initiated by patients in an adult CF centre: a twelve-month prospective study
A. Schmidt1 , N. Christiansen1 , L. Alice1 , R. O’Connor1 , C. Lambert1 , J. Cowlard1 , K. Blakeley1 , C. Keane1 , S. Sharpe1 , M. McLean1 , H. Kalsi1 , S. Brown1 , C. Nwokoro1 , C. Pao1 . 1 Royal London Hospital, London, United Kingdom
E. Burnet1,2 , P.-R. Burgel1,2 , J. Champreux1,2 , I. Honore´ 1,2 , R. Kanaan1,2 , R. Panzo1,2 , C. Dupont1,2 , D. Hubert1,2 . 1 Cochin Hospital, Assistance Publique – Hˆ opitaux de Paris, Pulmonary Department and Adult Cystic Fibrosis Centre, Paris, France; 2 Universit´e Paris Descartes, Sorbonne Paris Cit´e, Paris, France
Objective: Multidisciplinary care for children with cystic fibrosis (CF) requires efficient use of time and resources. At our paediatric CF centre at the Royal London Hospital, visits can be very time consuming for both families and team members especially during Annual Review (AR) clinics when patients meet up to 7 different professionals. We aimed to improve efficiency whilst maintaining segregation and quality of care.
Objectives: In CF centres, patient care is structured around regular visits and hospitalisations, yet a large proportion of our activity is also unscheduled and patient initiated. We sought to assess why and how patients contact our CF centre and how much time is spent handling their requests.
clinic at Hannover Medical School were examined for anomalous ion conductance of their respiratory epithelium by nasal transepithelial potential difference (NPD) measurements. Results: NPD tracings were normal for 26 subjects. The remaining six subjects presented anomalous NPD tracings. Pathological Sermet scores led to the diagnosis of CF in one subject and of CFTR-related disorder in two subjects. The fourth subject was a 62-year old female showed strongly fluctuating potentials on repeated measurements which probably reflected large temporal variations of open ENaC and CFTR channels. Two subjects did not show any hyperpolarization upon exposure to amiloride consistent with pseudohypoaldosteronism. Conclusion: This NPD investigation uncovered an unexpectedly large portion of NCFBE individuals with anomalous NPD. Adult chest physicians may care for numerous cases with undiagnosed ENaC or CFTR disorder. Screening by NPD should detect these subjects who could then immediately benefit from the established standards of CF care.
ePS02. The CF team in development ePS02.1 Advanced care planning and thinking ahead in cystic fibrosis: a quality improvement pilot project for adults with cystic fibrosis R.S. Meharry1 , S. Patel1 , G. MacGregor1 . 1 Queen Elizabeth University Hospital – NHS Greater Glasgow and Clyde, Respiratory Department – Cystic Fibrosis Unit, Glasgow, United Kingdom
S39
unwell patients. The hospital in the home (HITH) service for CF patients at The Royal Children’s Hospital has been undergoing a series of changes to enable hospital level care to be provided in the home. The purpose of this study was to evaluate the effect of these changes on service utilisation and time to transfer. Methods: A series of changes to the CF HITH service were implemented last year including: increased physiotherapy service (face-to-face or telehealth one to two times daily), home spirometry, increased HITH medical involvement, introduction of a day seven review, introduction of a direct HITH admission pathway, and streamlining of the transfer processes. Effectiveness was evaluated primarily through an audit of hospitalisations for CF patients. Results: The number of admissions utilising HITH increased from 39% prior to service changes to 50%, 52% and 54% over three successive quarters after changes began. Similarly, the average time to HITH transfer reduced from 6.2 days to 5.4, 5.3 and 4.0 days over three successive quarters. Conclusion: Following changes to the HITH service to better emulate a hospital level service there has been an increase in the number of patients who were able to have their admission conducted through HITH and patients transferred to HITH earlier in their admission. Next we will evaluate consumer satisfaction with this improved service. ePS02.3 The future of CF care: identifying trainees’ attitudes and potential barriers to becoming a CF specialist D. Higbee1 , C. Addy2 , D. Nazareth3 . 1 St Thomas’ Hospital, London, United Kingdom; 2 Queen’s University, Centre for Infection and Immunity, Belfast, United Kingdom; 3 Bristol Royal Infirmary, Adult CF Unit, Bristol, United Kingdom
Objectives: 1. Assess cystic fibrosis (CF) healthcare provider (HCP) and adult patient attitudes to advance care planning (ACP) in a UK based CF centre. 2. Improve CF multidisciplinary team (MDT) ACP practices through training from the palliative care team (PCT). 3. Commence the ACP process with higher risk adult CF patients. Methods: 1. In response to research that a minority of adults with CF formulate an ACP with their clinicians, the CF MDT was surveyed to assess current ACP practices. 2. The hospital PCT provided training for the CF MDT. 3. The ACP project was piloted with patients demonstrating advanced disease: FEV1 <40% predicted (mean 30% predicted), referred/listed for lung transplant (6/13) or referred to the PCT for symptom management (9/13). 4. Two generic ACP guides were used to facilitate ACP discussions over several clinical sessions. 5. Patients were surveyed about their ACP experience. Results: CF HCP respondents (n = 14) reported commencing ACP typically when the patient has advanced disease or is dying but 61.5% felt ACP discussions should be had multiple times in a variety of settings. 100% agreed that ACP is “useful”/“worthwhile” but “stressful”. Patients identified as higher risk (n = 13): 6 male, mean age 35 (25–55). 1 died prior to completing ACP. Post ACP feedback demonstrates ACP well received by patients. Qualitative data from patient interviews and postACP survey will be updated for conference proceedings. Conclusion: This project demonstrated that CF HCP ACP practices and comfort could be improved. In response we are partnering with patients and the CF team in designing and piloting a new ACP document specifically for adults with CF in the UK.
Reference(s) [1] Burgel et al. ERJ 2015, 46(1), 133–141.
ePS02.2 Providing hospital level care in the home
ePS02.4 Perceptions of end of life care in adult patients with cystic fibrosis
F.C. Moran1 , S. Parsons2 , J. Glazner3 . 1 The Royal Children’s Hospital, Physiotherapy Department, Parkville, Australia; 2 The Royal Children’s Hospital, RCH@Home, Parkville, Australia; 3 The Royal Children’s Hospital, Department of Respiratory Medicine, Parkville, Australia
F. Cathcart1 , H. Parrott1 , J. Ross1 , A.M. Jones1 , N.J. Simmonds1,2 . 1 Royal Brompton Hospital, London, United Kingdom; 2 Imperial College London, London, United Kingdom
Objectives: Provision of inpatient level care in the home environment can be beneficial for both patients and their families (increased rest, reduced social disruption, ability to attend school, reduced risk of cross infection) and also for hospitals by making beds available for acutely
Introduction: With the cystic fibrosis (CF) population predicted to rise by 79.8% [1] in 10 years, over 180 specialist CF doctors may be needed to provide care and workforce planning needs to start now to ensure future provision. Current UK requirements for respiratory specialist training in CF are a 3-month CF attachment or 4 CF clinics and 1 multidisciplinary meeting. We aimed to ascertain Respiratory trainees’ attitudes towards a career in CF with a view to identifying barriers. Methods: An online questionnaire was distributed to a cross section (n = 40) of adult respiratory medicine speciality trainees across 8 UK training regions. Results: 75% were senior trainees in their final two years of training. 92% felt a speciality certificate examination alone was insufficient to work as a CF specialist. Only 53% had spent 1–4 months working in a CF centre. 80% of responders said their attachment wasn’t sufficient to be a specialist CF consultant; with 63% of trainees yet to work at a CF centre having to organise training themselves. 27% would consider a career in CF with 63% citing an exciting and challenging patient population as a reason. Of those not wishing to pursue CF as a speciality: 40% cited lack of exposure and 44% the perceived challenging patient population. Conclusions: Currently few trainees would consider a career in CF with lack of exposure being a barrier. The number of CF consultants must increase to meet the demands of a population rising in number and complexity and current training requirements require urgent review. UK and European CF specialists need to explore ways to increase training exposure to CF.
Objectives: End of life care (EOLC) in CF can be unique and complex. EOLC initiatives remain high on the healthcare agenda but the question of how best to put these into practice to enhance care and staff coping remains unanswered. The aim was to collate and understand the current qualitative evidence on perceptions of EOLC in CF and survey the
S40
Oral Presentations / Journal of Cystic Fibrosis 15 (2016) S1–S50
multidisciplinary team (MDT) in a large CF centre in the UK (n = 585, non-transplanted) to explore their experience and views (average 16 deaths/year over last 3 years). Methods: A qualitative systematic review using meta-ethnography was completed. A survey was devised using the key themes and questioned the MDT on areas such as managing EOLC, emotional demands and education. Results: Four studies were selected from the systematic review, identifying three key features of providing high quality EOLC; education, communication and coping strategies. 28 (80%) survey responses were collected from the MDT. Staff agreed or strongly agreed that they felt comfortable discussing EOLC (71%) and identifying patients approaching EOLC (82%). 21% of respondents did not feel they could cope with the emotional demands and would like to receive more training on topics including EOLC (52%) and difficult conversations (52%). 20 (72%) staff wanted to be offered more opportunity to reflect following the death of a patient. Conclusion: Despite the MDT having access to generic EOLC education, improved support and training for staff was a strong theme from both the systematic review and the survey. A CF targeted educational programme with regular structured reflection may better address continued training needs of the CF MDT. ePS02.5 Striving to improve the outpatient journey for adults with cystic fibrosis – a quality improvement project S. Talbot1 , H. Parrott1 , S. Madge1 , K. Gyi1 , A.M. Jones1 , N.J. Simmonds1 . 1 Royal Brompton Hospital, Department of Adult Cystic Fibrosis, London, United Kingdom
Methods: Using Lean Thinking Methodology, our team identified issues causing inefficiencies during clinics. In a team workshop with an external facilitator, clinic flow was analysed through flow mapping. Barriers to effective functioning were identified through root cause analysis, solutions formulated and responsibilities for implementation allocated to individual team members. The process was evaluated using a structured questionnaire. Results: We identified the following issues: ‘empty’ time, inconsistent clinic structure, information/results availability, difficulties with realtime within-team information sharing. The following strategies were employed: newsletters to families to emphasize importance of punctuality, formalised clinic structure, pre-clinic team briefing, communication board, debriefing with action plan and task allocation. Longterm improvements are ongoing. We evaluated questionnaires from 12 team members. Half of the team members reported that AR clinics improved immediately, 92% anticipated an improvement in the long term, 67% noticed an impact on ordinary clinics. Conclusions: Lean Thinking Methodology was successfully applied in a CF outpatient setting. Team members reported an improvement in AR clinics and ordinary clinics. ePS02.7 How accurate are members of the CF multi disciplinary team at predicting patient adherence to CF treatment? N. Rao1 , R. Collins2 , J. Watkinson1 , K. Ransom1 , L. Tomlinson1 . 1 University Hospital of South Manchester, Paediatrics, Manchester, United Kingdom; 2 University of Manchester, Manchester Medical School, Manchester, United Kingdom
Introduction: Significant waiting, inefficient processes and challenges in segregation led to reduced patient and MDT (multidisciplinary team) satisfaction in our cystic fibrosis clinics. An audit in May 2015 highlighted that 70% of patients were spending more than 75 minutes in the clinic from arrival to last consultation. In addition, up to 80% of patients were not attending at their allocated appointment times. Objective: A quality improvement (QI) project was implemented to reduce waiting times and the number of patients present in clinic for >75 minutes by 25% using PDSA (plan, do, study, act) cycles of change. Methods: Clinic data were collected and continually analysed via run charts from May 2015 including: duration of the pre-clinic meeting, waiting times, attendance times, total length of time spent in clinic and a survey of staff opinion. Cycles of change included: (1) Reducing pre clinic meeting duration, (2) Writing to patients (n = 585) to detail the project and request attendance at their allocated appointment time and (3) Updating the clinic booking template to increase appointment availability and improve attendance structure. Results: After implementation, there was a reduction in the pre clinic meeting from 45 minutes to a mean duration of 25 minutes by November. 67% (vs. 36%) of patients now attend clinic on time. Only 23% of patients are in clinic for >75 minutes. No breaches in the segregation process were observed. On re-survey the MDT were more positive about the clinic experience. Conclusions: As a large adult centre it is essential we strive to continuously improve our service and overcome challenges that may compromise the patient experience.
Objectives: To compare the accuracy of paediatric CF multidisciplinary teams perceived patient adherence to treatment with objective measures of adherence using GP prescription issue data. Methods: We conducted a multi method assessment of adherence at our paediatric CF clinic of 22 children (<18 years). Objective adherence was measured using GP repeat prescription orders which were compared with each patient’s expected medication consumption retrospectively over a specified three-month period between October and December 2014. 16 patients or their parents completed a questionnaire which assessed self-reported adherence to treatment. Each member of the MDT (Doctor, specialist nurse, physiotherapist and dietician) was asked to predict the percentage adherence to treatment for each patient in 4 ranges (<40%, 40–60%, 60–80%, >80%). Results: The predicted adherence by the MDT team correlated very poorly with actual measured adherence. The mean accuracy was 34% (27–45%). Surprisingly the study found that the team were more likely to underestimate compliance in up to a third of the cases. The mean objective adherence rate amongst our patients was low at 61.8% (27.7–94.6%). The mean subjective self reported adherence rate was 91.6% (74.7–100.0%). Nutritional supplements followed by respiratory medications were associated with the poorest adherence. Conclusion: This study demonstrated the difficulty is assessing patient adherence and the extent of the problem of adherence in a paediatric CF cohort A dedicated CF multidisciplinary is not very accurate at predicting patient adherence to treatment and more objective measures need to be implemented to assess adherence.
ePS02.6 Improving efficiency in an outpatient setting – Experience from a paediatric CF centre in East London
ePS02.8 Unscheduled contacts initiated by patients in an adult CF centre: a twelve-month prospective study
A. Schmidt1 , N. Christiansen1 , L. Alice1 , R. O’Connor1 , C. Lambert1 , J. Cowlard1 , K. Blakeley1 , C. Keane1 , S. Sharpe1 , M. McLean1 , H. Kalsi1 , S. Brown1 , C. Nwokoro1 , C. Pao1 . 1 Royal London Hospital, London, United Kingdom
E. Burnet1,2 , P.-R. Burgel1,2 , J. Champreux1,2 , I. Honore´ 1,2 , R. Kanaan1,2 , R. Panzo1,2 , C. Dupont1,2 , D. Hubert1,2 . 1 Cochin Hospital, Assistance Publique – Hˆ opitaux de Paris, Pulmonary Department and Adult Cystic Fibrosis Centre, Paris, France; 2 Universit´e Paris Descartes, Sorbonne Paris Cit´e, Paris, France
Objective: Multidisciplinary care for children with cystic fibrosis (CF) requires efficient use of time and resources. At our paediatric CF centre at the Royal London Hospital, visits can be very time consuming for both families and team members especially during Annual Review (AR) clinics when patients meet up to 7 different professionals. We aimed to improve efficiency whilst maintaining segregation and quality of care.
Objectives: In CF centres, patient care is structured around regular visits and hospitalisations, yet a large proportion of our activity is also unscheduled and patient initiated. We sought to assess why and how patients contact our CF centre and how much time is spent handling their requests.