The nursing contribution to chronic disease …

1 SDO Project (08/1605/121) Queen's Printer and Controller of HMSO 2010 1 The nursing contribution to chronic disease management : a whole systems approach Report for the National Institute for Health Research Service Delivery and Organisation programme August 2010 prepared by Sally Kendall Centre for Research in Primary and Community Care (CRIPACC), University of Hertfordshire Patricia Wilson CRIPACC, University of Hertfordshire Susan Procter Department of Public Health, Primary Care and Food Policy, City University Fiona Brooks CRIPACC, University of Hertfordshire Frances Bunn CRIPACC University of Hertfordshire Heather Gage Department of Economics, University of Surrey Elaine McNeilly CRIPACC, University of Hertfordshire SDO Project (08/1605/121)

2 Queen's Printer and Controller of HMSO 2010 2 Address for correspondence Sally Kendall CRIPACC University of Hertfordshire College Lane Hatfield Herts AL10 9AB E-mail: SDO Project (08/1605/121) Queen's Printer and Controller of HMSO 2010 3 Contents Acronyms ..8 Acknowledgements .. 10 Executive 12 Background .. 12 Aims .. 12 Methods .. 12 Key findings .. 13 Conclusions .. 15 1 17 Previous approaches to chronic disease nursing and long-term The long-term conditions model ..19 Aims and objectives of the The structure of this 2 Methodology .. 23 A whole systems approach ..23 Phase 1: Scoping Inclusion criteria ..26 Search Strategy to identify Data extraction and evaluation of Synthesis of Systematic web site Synthesis of Phase 2: Stakeholder consensus Aims of the Conference.

3 29 Theoretical Identification of Conference Methodology ..30 Consensus Follow-up International Panel Phase 3: Multiple case study Unit of analysis ..32 SDO Project (08/1605/121) Queen's Printer and Controller of HMSO 2010 4 Explanatory Selection of case studies ..32 Data Quantitative Qualitative Project steering group & public Ethics and research governance ..41 3 Mapping of the 44 Types of Types of participants ..44 Type of The nature of the nurses role ..47 Training and Effectiveness of nursing Barriers and The patient 4 Consensus Conference .. 68 Identification of Participants ..68 Themes from the consensus conference ..70 What is the nursing contribution ?

4 70 Enabling factors for an effective nursing Barriers to an effective nursing contribution ..71 Issues Specific to Each nursing Consensus follow-up Key Elements of the Workshop International Panel 5 Case studies .. 78 The public health Origins of the model ..82 The public health model and the whole systems The user The causal The data system ..103 The organisational whole system ..105 Primary Care nursing The PCN1 Case Study The PCN2 Case Study SDO Project (08/1605/121) Queen's Printer and Controller of HMSO 2010 5 The Service User The Organisational Whole The Data The Whole The Causal Nurse specialist model ..132 Epilepsy Nurse Diabetes Nurse NS1 case study site.

5 133 NS2 case study site ..134 The service user The organisational whole system ..139 The data system ..142 The causal Community Matron Community CM1 case study CM2 case study The service user The organisational whole system ..152 The data system ..155 The causal 6 Survey data .. 165 Survey findings from the public health model Prevalence of Population Health and Asthma Mood and general health ..170 Family Confidence in coping with Adult case study sites survey Results ..174 7 Economic Analysis .. 189 Introduction ..189 Data collection and SDO Project (08/1605/121) Queen's Printer and Controller of HMSO 2010 6 8. Discussion .. 209 Introduction ..209 Impact of policy triggers on origins of all models.

6 212 Consequences of pilot working and alternative sources of funding ..216 Benefits of the nursing contribution to models of chronic disease management ..218 Constraints and contradictions in patient centred Model patronage and origins of the Invisibility of the public health Patient perceptions and expectations ..227 Limitations of the 9. Conclusions .. 235 Implications for commissioners and providers ..235 Implications for practitioners ..237 Implications for research and References .. 242 Appendix 1 Search Strategy .. 256 Appendix 2 Conference Brief and Format .. 260 Appendix 3 Consensus conference follow-up workshop data form .. 262 Appendix 4 Adult patient interview schedule .. 265 Appendix 5 Family carer interview schedule.

7 266 Appendix 6 Parent interview schedule .. 268 Appendix 7 Young person interview schedule .. 269 Appendix 8 Health professional interview .. 271 Appendix 9 Young person focus group 273 Appendix 10 Adult survey.. 275 Appendix 11 Young Person Survey .. 284 Appendix 12 NRES approval .. 308 Appendix 13 NRES first amendment .. 309 Appendix 13 NRES first amendment .. 310 Appendix 13 NRES first amendment .. 311 Appendix 14 Recruitment process in adult case study .. 312 SDO Project (08/1605/121) Queen's Printer and Controller of HMSO 2010 7 Appendix 14 Recruitment process in adult case study .. 313 Appendix 15 Recruitment process in younger person case study 314 Appendix 16 NRES second amendment .. 315 Appendix 17 NRES third 318 Appendix 18 References to included studies.

8 319 Appendix 18 References to included studies .. 320 Appendix 19 Quality Assessment Tables.. 339 Appendix 20 Evidence Tables .. 346 Appendix 21 Adolescent s Self-Efficacy Scale .. 347 Appendix 22 Tables showing data from the adult case study 349 SDO Project (08/1605/121) Queen's Printer and Controller of HMSO 2010 8 Acronyms BMI Body Mass Index BP Blood Blood Pressure CDM chronic disease management CHD Coronary Heart disease CM Case management COPD chronic Obstructive Pulmonary disease COREC Central Office for Research Ethics Committees CRC Cardiff Research Consortium DAFNE Dose Adjustment for Normal Eating DCSF Department for Children, Schools and Families DESMOND Diabetes Education and Self management for Ongoing and Newly Diagnosed DM disease management DNA Do Not Attend DSN Diabetes Specialist Nurse ECM PF Every Child Matters Policy Framework EMIS Egton Medical Information Systems ED (US) Emergency Department (US)

9 ESN Epilepsy Specialist Nurse FEV1 Forced Expiratory Volume in 1 second FTE Full Time Equivalent GMS General Medical Services GP General Practitioner GPN General Practice Nurse HbA1C Glycosylated haemoglobin A1C HDL High-Density Lipoprotein HODaR Health Outcomes Data Repository INR International Normalised Ratio ISOFT Specialist health information technology provider SDO Project (08/1605/121) Queen's Printer and Controller of HMSO 2010 9 LA Local Authority LDL Low-Density Lipoprotein LHB Local Health Board LTC Long Term Condition MDT Multidisciplinary Team MI Myocardial Infarction MS Multiple Sclerosis NICE National Institute for Health and Clinical Excellence NIHR National Institute for Health Research NRES National Research Ethics Service NSF National Service Framework NVIVO Qualitative Research Software QOF Quality and Outcomes Framework QoL Quality of Life PARR Patients At Risk of Readmission PBC

10 Practice Based Commissioning PCT Primary Care Trust PE Physical Education PDS Parkinson s disease Society PSA Public Service Agreement RCT Randomised Controlled Trial SD Standard Deviation SDO Service, Delivery and Organisation SOA Super Output Area TAU Treatment As Usual SDO Project (08/1605/121) Queen's Printer and Controller of HMSO 2010 10 Acknowledgements We are indebted to service users and providers in the seven case study sites for their time and support. The project took place during significant health service reorganisation and we want to acknowledge the time they took in facilitating data collection. We would also like to acknowledge the help provided by a number of researchers during various stages of the project.