title: EXPERTS 1-experiences of long-term life-limiting conditions among patients and carers: protocol for a qualitative meta-synthesis and conceptual modelling study.
abstract: BACKGROUND
  Increasing numbers of the population are living with long-term life-limiting conditions with a significant proportion characterised by multimorbidity. Patients with these conditions often experience high volumes of clinical interaction involving them, their caregivers and healthcare providers in complex patterns of organising, coordinating, negotiating and managing care. A better understanding of the sources of experienced complexity and multimorbidity, from the patient perspective is paramount to improve capacity and manage workload to promote improved experience of illness, more effective healthcare utilisation and improved healthcare outcomes. To better understand the sources of complexity we will undertake an evidence synthesis of qualitative studies of patient and informal carer experiences of three common long-term life-limiting conditions. We will investigate what is known about these diseases at different stages in disease progression, treatment regimens and places of care.
  
  
  METHODS
  We will include qualitative studies of patients' and carers' (aged >18) accounts of their experiences of healthcare provision in a range of settings and healthcare systems. We will conduct an extensive electronic database search of publications in English between 2000 and 2014. Results and discussions sections of the papers will be regarded as formal data using the constant comparison method of qualitative analysis. From the meta-synthesis results, we will build a conceptual model of mechanisms and processes that shape patients' journeys towards end of life to suggest where in the patient journey new interventions to improve patient and carer experience can be developed and delivered. The study is being conducted between 1 December 2014 and 31 December 2015.
  
  
  BACKGROUND
  No human subjects or personal data are involved and no ethical issues are anticipated. An important element of dissemination is informing user communities about the practical implications of the work through workshops, meetings and social media. Scientific results will be published in peer reviewed journals and disseminated through conferences.
  
  
  BACKGROUND
  PROSPERO CRD42014014547.
authors.affiliation: Faculty of Health Sciences, University of Southampton, Southampton, UK NIHR CLAHRC Wessex, University of Southampton, Southampton, UK University Hospital Southampton NHS Foundation Trust, Southampton, UK.
authors.forename: Carl R
authors.initials: CR
authors.lastname: May
authors.affiliation: Faculty of Health Sciences, University of Southampton, Southampton, UK NIHR CLAHRC Wessex, University of Southampton, Southampton, UK University Hospital Southampton NHS Foundation Trust, Southampton, UK.
authors.forename: Jayne
authors.initials: J
authors.lastname: Masters
authors.affiliation: Faculty of Health Sciences, University of Southampton, Southampton, UK NIHR CLAHRC Wessex, University of Southampton, Southampton, UK Solent NHS Trust, Southampton, UK.
authors.forename: Lindsay
authors.initials: L
authors.lastname: Welch
authors.affiliation: Faculty of Health Sciences, University of Southampton, Southampton, UK NIHR CLAHRC Wessex, University of Southampton, Southampton, UK.
authors.forename: Katherine
authors.initials: K
authors.lastname: Hunt
authors.affiliation: Faculty of Health Sciences, University of Southampton, Southampton, UK NIHR CLAHRC Wessex, University of Southampton, Southampton, UK.
authors.forename: Catherine
authors.initials: C
authors.lastname: Pope
authors.affiliation: Faculty of Health Sciences, University of Southampton, Southampton, UK NIHR CLAHRC Wessex, University of Southampton, Southampton, UK.
authors.forename: Michelle
authors.initials: M
authors.lastname: Myall
authors.affiliation: Faculty of Health Sciences, University of Southampton, Southampton, UK NIHR CLAHRC Wessex, University of Southampton, Southampton, UK.
authors.forename: Peter
authors.initials: P
authors.lastname: Griffiths
authors.affiliation: NIHR CLAHRC Wessex, University of Southampton, Southampton, UK University Hospital Southampton NHS Foundation Trust, Southampton, UK Faculty of Medicine, University of Southampton, Southampton, UK.
authors.forename: Paul
authors.initials: P
authors.lastname: Roderick
authors.affiliation: York Health Economics Consortium, University of York, York, UK.
authors.forename: Julie
authors.initials: J
authors.lastname: Glanville
authors.affiliation: Faculty of Health Sciences, University of Southampton, Southampton, UK NIHR CLAHRC Wessex, University of Southampton, Southampton, UK University Hospital Southampton NHS Foundation Trust, Southampton, UK.
authors.forename: Alison
authors.initials: A
authors.lastname: Richardson
mesh_terms: D006801:Humans; D044362:Australasia; D017028:Caregivers; D002908:Chronic Disease / Q000628:therapy; D003695:Delivery of Health Care / Q000592:standards; D019033:Delivery of Health Care, Integrated / Q000592:standards; D005060:Europe; D008134:Long-Term Care / Q000458:organization & administration / Q000592:standards; D009656:North America; D036301:Qualitative Research; D000078202:Systematic Reviews as Topic; D015201:Meta-Analysis as Topic
keywords: chronic disease; multimorbidity; patient complexity; treatment burden; workload
references.citation: Qual Health Res. 2002 Apr;12(4):437-52
references.pmid: 11939247
references.citation: J Gen Intern Med. 2007 Dec;22 Suppl 3:382-90
references.pmid: 18026806
references.citation: Int J Qual Health Care. 2007 Dec;19(6):349-57
references.pmid: 17872937
references.citation: Med Care. 2014 Mar;52 Suppl 3:S3-6
references.pmid: 24561755
references.citation: Med Care. 2014 Mar;52 Suppl 3:S118-25
references.pmid: 24561750
references.citation: BMC Med Res Methodol. 2012;12:181
references.pmid: 23185978
references.citation: Lancet. 2012 Jul 7;380(9836):37-43
references.pmid: 22579043
references.citation: Int J Nurs Stud. 2012 Dec;49(12):1582-97
references.pmid: 22721677
references.citation: J Adv Nurs. 2013 Apr;69(4):760-72
references.pmid: 23163719
references.citation: Patient Relat Outcome Meas. 2012;3:39-49
references.pmid: 23185121
references.citation: BMJ. 2009;339:b2803
references.pmid: 19671932
references.citation: BMC Health Serv Res. 2014;14:281
references.pmid: 24969758
references.citation: J Clin Epidemiol. 2012 Oct;65(10):1041-51
references.pmid: 22910536
references.citation: Chronic Illn. 2005 Dec;1(4):265-74; discussion 275-9
references.pmid: 17152451
references.citation: Br J Gen Pract. 2012 Jul;62(600):e503-10
references.pmid: 22781998
references.citation: Child Care Health Dev. 2011 Nov;37(6):780-91
references.pmid: 22007977
references.citation: BMJ Open. 2013 Sep 13;3(9):e003610
references.pmid: 24038011
references.citation: Health Policy Plan. 2015 Apr;30(3):368-85
references.pmid: 24561988
references.citation: Qual Health Res. 2005 Nov;15(9):1277-88
references.pmid: 16204405
references.citation: PLoS One. 2013;8(4):e59723
references.pmid: 23565162
references.citation: PLoS Med. 2013;10(6):e1001473
references.pmid: 23824703
references.citation: BMC Public Health. 2014;14:575
references.pmid: 24912531
references.citation: Health Expect. 2015 Jun;18(3):312-24
references.pmid: 23363080
references.citation: Int J Integr Care. 2013 May 17;13:e019
references.pmid: 23882168
references.citation: Med Care. 2014 Mar;52 Suppl 3:S7-S14
references.pmid: 24561762
references.citation: Med Hypotheses. 2005;65(1):114-22
references.pmid: 15893128
references.citation: Bull World Health Organ. 2012 May 1;90(5):357-64
references.pmid: 22589569
references.citation: JAMA Intern Med. 2014 Jul;174(7):1095-107
references.pmid: 24820131
references.citation: Curr Opin Support Palliat Care. 2013 Mar;7(1):3-7
references.pmid: 23196381
references.citation: Implement Sci. 2009 May 21;4:29
references.pmid: 19460163
references.citation: J Hosp Med. 2012 Nov-Dec;7(9):709-12
references.pmid: 23212980
references.citation: Br J Gen Pract. 2007 Dec;57(545):971-8
references.pmid: 18252073
references.citation: Int J Nurs Stud. 2014 Feb;51(2):289-99
references.pmid: 23910398
references.citation: Implement Sci. 2013;8:18
references.pmid: 23406398
references.citation: Med Care. 2014 Mar;52 Suppl 3:S67-74
references.pmid: 24561761
references.citation: Psychol Health. 2012;27(10):1211-26
references.pmid: 22390140
references.citation: Lancet. 2005 Sep 3-9;366(9488):825-31
references.pmid: 16139657