- Email: [email protected]
271 The development of a paediatric telephone triage tool in a cystic fibrosis unit in the UK
Posters
11. Nursing/Psychosocial/Quality Improvement
269 Living with cystic fibrosis in a remote or rural area M.M. Jessup1,2 , L. Shields3 , T. Douglas4 , W. Smyth3 , G. Abernethy3 , L. Priddis5 . 1 Australian Catholic University/The Prince Charles Hospital, Research & Practice Development Unit, Brisbane, Australia; 2 University of Queensland, Queensland Children’s Medical Research Institute, Brisbane, Australia; 3 James Cook University/Townsville Hospital and Health Service, Tropical Health Research Unit, Townsville, Australia; 4 Telethon Institute for Child Health Research/On behalf of AREST-CF, Perth, Australia; 5 Edith Cowan University, School of Psychology and Social Science, Perth, Australia Australia is a vast country, its capital cities sited around its coastline where all primary cystic fibrosis (CF) treatment centres are located. However, many families with a child with CF live in rural or remote areas, often thousands of kilometres away. Little is known of the impact on their daily lives of living far from their main health resource. Objectives: To improve the delivery of family centred care (FCC) to children with CF and their families who live distant from main treatment centres, and to understand what such distances mean to the care they are able to access. Method: Semi-structured interviews (n = 15) were conducted with parents of a child with CF who live in the Townsville Health Service region, Queensland. Results: Thematic analysis revealed parents seeking certainty and continuity in the uncertain realm of CF, their issues not unlike those of their city counterparts, but exacerbated by their sense of distance and isolation. So for example, while change of care-team is difficult anywhere, the impact is magnified when stretched over distance. Parents discussed having to establish rapport, build trust and tell their story again. especially when seeking to feel part of the visiting outreach team from the tertiary centre. Participants conveyed strategies and strong resolve, such as choosing to drive fifty minutes to a known medical centre to avoid a local one, which might be seen as insufficiently trustworthy or knowledgeable by parents who, by contrast, clearly are. Conclusion: Insight into this unique milieu from a parental perspective is required so that care can accommodate the challenging environment and be planned around the whole family.
S127
271 The development of a paediatric telephone triage tool in a cystic fibrosis unit in the UK J. Bloomer1 , C.A. Sharpe1 , A. Sewell1 , C. Fagan1 . 1 Great North Children’s Hospital, Children’s Respiratory Unit, Newcastle upon Tyne, United Kingdom The paediatric CF unit at the RVI in Newcastle upon Tyne has 176 children who attend for full care from throughout the Northern region of the UK. Children are reviewed in clinic every 6 weeks, between clinics the CF team rely on parents/carers to report any increase in respiratory symptoms by telephone. Telephone triage, with particular reference to respiratory exacerbation, is a recognised service provided by most, if not all Paediatric CF centres within the UK. Documentation of this care episode was inadequate and not recorded in the patients’ medical notes. This was identified as a potential risk. A review of current practice in UK CF centres identified an absence of a structured assessment triage tool. Various methods to record and report symptoms were described, however it was evident that there was a distinct lack of a consistent clinical approach to this area of care. Therefore a telephone triage tool was developed in October 2013 to enable the CF nurses to assess children using a symptom based protocol. The proforma enables the nurses to identify a respiratory exacerbation, it utilises a systematic approach which identifies the presenting problems and moves through a series of prompts which aid the nurse make a decision. The outcomes are determined by the information gathered. A retrospective review covering a period of 12 months has indicated that the tool is working effectively. The review has highlighted some areas for development such as an early warning/traffic light system. Few such tools have been developed that are particular to CF respiratory symptoms and it is envisaged that following further development, it may be implemented by other CF MDT members.
270 Home antibiotic treatment in cystic fibrosis: An effective, cost saving and preferred choice among patients with CF
272 A proposal for specific monitoring sheets for patients taking ivacaftor
E. Hatziagorou1 , E. Chrysochoou1 , F. Kirvassilis1 , J. Tsanakas1 . 1 CF Unit, Aristotle University of Thessaloniki, 3rd Paediatric Dept, Thessaloniki, Greece
M. Kerbrat1 , R. Fretay2 , D. Chevalier3 , F. You3 , M. Chiffoleau4 , A. Hubault4 , C. Matras5 , I. Berhault6 , M.T. Jousseaume6 , M.C. L’Abb´e6 , C. Pingon6 , M.C. Quillevere7 , S. Paul7 , K. Sery8 , M. Idres9 . 1 CF reference centre NantesRoscoff, France; 2 CF centre Vannes-Lorient, France; 3 CF centre Nantes, France; 4 CF centre Angers, France; 5 CF centre Tours, France; 6 CF centre Rennes, France; 7 CF centre Roscoff, France; 8 St Nazaire Hospital, France; 9 St Brieuc Hospital, France
Aim: A prospective clinical study was carried out to compare safety, efficacy and cost benefits of home and hospital iv antibiotic treatment among CF children and adolescents. Method: The clinical, quality of life outcome and cost benefits of Home vs. Hospital antibiotic treatment were assessed. Evaluation of clinical outcome was assessed by measuring forced expiratory volume in one second (FEV1 ) and weight before and one months after antibiotic treatment. Quality of life was also assessed using the DISABKIDS questionnaire. Cost analysis was performed to assess cost benefits from home iv treatment. Results: 35 patients with cystic fibrosis (mean age: 12.6±7 years, 56% male) colonized with Pseudomonas aeruginosa were treated with iv antibiotics for two weeks either at hospital (15 patients), or at home (20 patients). Mean FEV1 % was 80.9 (±26), mean weight was 37.7 (±17) kg; mean height was 142.9 (±26) cm. The clinical outcome was beneficial in 92% of the studied population. Lung function (FEV1) and weight improved significantly in both groups (p < 0.05). Hospital treatment did not show better clinical outcome, compared to home treatment (Dweight, p = 0.608; DFEV1, p = 0.606). Apart from the psychosocial advantages and improvement of quality of life, the economical savings were substantial (p < 0.001), among the patients treated at home. There were no complications, apart from a rash five days after drug administration in one patient, among the patients treated at home. Conclusions: Home iv therapy, monitored by regular visits by a home care nurse, is a safe, effective and cost saving therapeutic option in CF.
The coordinating nurses group of the West of France CF network, representing 9 CF centres and about 1000 patients. It meets 4 times a year. A Senior Coordinator is responsible for the organization of meetings and project management. The objectives of these meetings are to discuss nursing practises, improve patient support, build and innovate together. One of the meetings in 2014 was focused on new therapies and especially ivacaftor (Kalydeco™). The aims were to improve knowledge about ivacaftor and to discuss of the potentials changes with ivacaftor in patients’ lives. Then, given the issues of this treatment, the coordinating nurses have built some specific monitoring sheets for the patients taking ivacaftor, assessing the medication adherence, and potential changes in the patient’s life (modification of care and treatment . . . ). This work shows the content of those questionnaires and some results showing its interest in the follow up of patients. Those questionnaires could be used for other specific upcoming treatments.
11. Nursing/Psychosocial/Quality Improvement
269 Living with cystic fibrosis in a remote or rural area M.M. Jessup1,2 , L. Shields3 , T. Douglas4 , W. Smyth3 , G. Abernethy3 , L. Priddis5 . 1 Australian Catholic University/The Prince Charles Hospital, Research & Practice Development Unit, Brisbane, Australia; 2 University of Queensland, Queensland Children’s Medical Research Institute, Brisbane, Australia; 3 James Cook University/Townsville Hospital and Health Service, Tropical Health Research Unit, Townsville, Australia; 4 Telethon Institute for Child Health Research/On behalf of AREST-CF, Perth, Australia; 5 Edith Cowan University, School of Psychology and Social Science, Perth, Australia Australia is a vast country, its capital cities sited around its coastline where all primary cystic fibrosis (CF) treatment centres are located. However, many families with a child with CF live in rural or remote areas, often thousands of kilometres away. Little is known of the impact on their daily lives of living far from their main health resource. Objectives: To improve the delivery of family centred care (FCC) to children with CF and their families who live distant from main treatment centres, and to understand what such distances mean to the care they are able to access. Method: Semi-structured interviews (n = 15) were conducted with parents of a child with CF who live in the Townsville Health Service region, Queensland. Results: Thematic analysis revealed parents seeking certainty and continuity in the uncertain realm of CF, their issues not unlike those of their city counterparts, but exacerbated by their sense of distance and isolation. So for example, while change of care-team is difficult anywhere, the impact is magnified when stretched over distance. Parents discussed having to establish rapport, build trust and tell their story again. especially when seeking to feel part of the visiting outreach team from the tertiary centre. Participants conveyed strategies and strong resolve, such as choosing to drive fifty minutes to a known medical centre to avoid a local one, which might be seen as insufficiently trustworthy or knowledgeable by parents who, by contrast, clearly are. Conclusion: Insight into this unique milieu from a parental perspective is required so that care can accommodate the challenging environment and be planned around the whole family.
S127
271 The development of a paediatric telephone triage tool in a cystic fibrosis unit in the UK J. Bloomer1 , C.A. Sharpe1 , A. Sewell1 , C. Fagan1 . 1 Great North Children’s Hospital, Children’s Respiratory Unit, Newcastle upon Tyne, United Kingdom The paediatric CF unit at the RVI in Newcastle upon Tyne has 176 children who attend for full care from throughout the Northern region of the UK. Children are reviewed in clinic every 6 weeks, between clinics the CF team rely on parents/carers to report any increase in respiratory symptoms by telephone. Telephone triage, with particular reference to respiratory exacerbation, is a recognised service provided by most, if not all Paediatric CF centres within the UK. Documentation of this care episode was inadequate and not recorded in the patients’ medical notes. This was identified as a potential risk. A review of current practice in UK CF centres identified an absence of a structured assessment triage tool. Various methods to record and report symptoms were described, however it was evident that there was a distinct lack of a consistent clinical approach to this area of care. Therefore a telephone triage tool was developed in October 2013 to enable the CF nurses to assess children using a symptom based protocol. The proforma enables the nurses to identify a respiratory exacerbation, it utilises a systematic approach which identifies the presenting problems and moves through a series of prompts which aid the nurse make a decision. The outcomes are determined by the information gathered. A retrospective review covering a period of 12 months has indicated that the tool is working effectively. The review has highlighted some areas for development such as an early warning/traffic light system. Few such tools have been developed that are particular to CF respiratory symptoms and it is envisaged that following further development, it may be implemented by other CF MDT members.
270 Home antibiotic treatment in cystic fibrosis: An effective, cost saving and preferred choice among patients with CF
272 A proposal for specific monitoring sheets for patients taking ivacaftor
E. Hatziagorou1 , E. Chrysochoou1 , F. Kirvassilis1 , J. Tsanakas1 . 1 CF Unit, Aristotle University of Thessaloniki, 3rd Paediatric Dept, Thessaloniki, Greece
M. Kerbrat1 , R. Fretay2 , D. Chevalier3 , F. You3 , M. Chiffoleau4 , A. Hubault4 , C. Matras5 , I. Berhault6 , M.T. Jousseaume6 , M.C. L’Abb´e6 , C. Pingon6 , M.C. Quillevere7 , S. Paul7 , K. Sery8 , M. Idres9 . 1 CF reference centre NantesRoscoff, France; 2 CF centre Vannes-Lorient, France; 3 CF centre Nantes, France; 4 CF centre Angers, France; 5 CF centre Tours, France; 6 CF centre Rennes, France; 7 CF centre Roscoff, France; 8 St Nazaire Hospital, France; 9 St Brieuc Hospital, France
Aim: A prospective clinical study was carried out to compare safety, efficacy and cost benefits of home and hospital iv antibiotic treatment among CF children and adolescents. Method: The clinical, quality of life outcome and cost benefits of Home vs. Hospital antibiotic treatment were assessed. Evaluation of clinical outcome was assessed by measuring forced expiratory volume in one second (FEV1 ) and weight before and one months after antibiotic treatment. Quality of life was also assessed using the DISABKIDS questionnaire. Cost analysis was performed to assess cost benefits from home iv treatment. Results: 35 patients with cystic fibrosis (mean age: 12.6±7 years, 56% male) colonized with Pseudomonas aeruginosa were treated with iv antibiotics for two weeks either at hospital (15 patients), or at home (20 patients). Mean FEV1 % was 80.9 (±26), mean weight was 37.7 (±17) kg; mean height was 142.9 (±26) cm. The clinical outcome was beneficial in 92% of the studied population. Lung function (FEV1) and weight improved significantly in both groups (p < 0.05). Hospital treatment did not show better clinical outcome, compared to home treatment (Dweight, p = 0.608; DFEV1, p = 0.606). Apart from the psychosocial advantages and improvement of quality of life, the economical savings were substantial (p < 0.001), among the patients treated at home. There were no complications, apart from a rash five days after drug administration in one patient, among the patients treated at home. Conclusions: Home iv therapy, monitored by regular visits by a home care nurse, is a safe, effective and cost saving therapeutic option in CF.
The coordinating nurses group of the West of France CF network, representing 9 CF centres and about 1000 patients. It meets 4 times a year. A Senior Coordinator is responsible for the organization of meetings and project management. The objectives of these meetings are to discuss nursing practises, improve patient support, build and innovate together. One of the meetings in 2014 was focused on new therapies and especially ivacaftor (Kalydeco™). The aims were to improve knowledge about ivacaftor and to discuss of the potentials changes with ivacaftor in patients’ lives. Then, given the issues of this treatment, the coordinating nurses have built some specific monitoring sheets for the patients taking ivacaftor, assessing the medication adherence, and potential changes in the patient’s life (modification of care and treatment . . . ). This work shows the content of those questionnaires and some results showing its interest in the follow up of patients. Those questionnaires could be used for other specific upcoming treatments.