title: Development of a Rheumatology-specific Patient Concerns Inventory and Its Use in the Rheumatology Outpatient Clinic Setting.
abstract: OBJECTIVE
  Successful management of rheumatic conditions involves increasing complexity of care. Delivering this in a holistic way is a growing challenge. The aim of our study was to develop a Patient Concerns Inventory (PCI) and assess it in the rheumatology clinic setting.
  
  
  METHODS
  This observational exploratory study occurred with 2 phases. In phase I, the PCI was developed after a systematic literature search, expert opinion, and 3 patient focus group discussions. In phase II, the PCI was piloted in a general rheumatology clinic.
  
  
  RESULTS
  Fifty-four patients were assessed in the pre-PCI group and 51 in the post-PCI group. Median (IQR) duration of consultation was 8 min (5-14) without PCI and 15 min (10-20) with PCI. The pre-PCI group raised 335 concerns from 50 patients, median (IQR) of 5 (3-10) per patient, rising post-PCI to 521 concerns, median (IQR) of 9 (5-16) from 51 patients, p = 0.002. Additional concerns predominantly arose from "physical and functional well-being" and "social care and well-being" domains. Most patients rated their experience with their doctor in the consultation as excellent or outstanding across all 11 questions in the questionnaire, both before and after the introduction of the PCI to the clinic setting.
  
  
  CONCLUSIONS
  The PCI is a useful holistic needs assessment tool for rheumatology clinics. Although its use may initially prolong the consultation slightly, patients can raise a significantly higher number of concerns, which does not occur at the expense of patient satisfaction. This may help in identifying areas of unmet needs that previously went unnoticed.
authors.affiliation: From the Department of Rheumatology, Aintree University Hospitals National Health Service (NHS) Trust, Liverpool; Edge Hill University, Ormskirk, UK.A.E. Ahmed, MBBS, MRCP, Consultant Rheumatologist and Acute Physician at Southport Hospital; D. Lowe, MSc, C.Stat., Medical Statistician at Evidence-Based Practice Research Centre (EPRC), Faculty of Health, Edge Hill University and Regional Maxillofacial Unit, University Hospital Aintree; J.A. Kirton, BSc (Hons), MSc, PGCE, Research Assistant at Edge Hill University; M.R. O'Brien, PhD, Professor of Palliative and Supportive Care at Edge Hill University; A. Mediana, BSc nursing, Research Nurse at Aintree University Hospital NHS Trust; H. Frankland, BSc, Senior Research Nurse, Aintree University Hospital NHS Trust; H. Bruce, MBChB (Hons), Salford Royal Foundation Trust; T. Kennedy, MBChB, Core Trainee in Anaesthesia, Aintree University Hospital NHS Trust; S.N. Rogers, FDS, RCS, FRCS, MD, EPRC, Faculty of Health and Social Care, Edge Hill University and Consultant Regional Head and Neck Unit, University Hospital Aintree; R.J. Moots, BSc (Hons), MB, BS (Hons), PhD, FRCP, Professor of Rheumatology, Aintree University Hospital NHS Trust. ashar.ahmed1@nhs.net.
authors.forename: Ashar E
authors.initials: AE
authors.lastname: Ahmed
authors.affiliation: From the Department of Rheumatology, Aintree University Hospitals National Health Service (NHS) Trust, Liverpool; Edge Hill University, Ormskirk, UK.A.E. Ahmed, MBBS, MRCP, Consultant Rheumatologist and Acute Physician at Southport Hospital; D. Lowe, MSc, C.Stat., Medical Statistician at Evidence-Based Practice Research Centre (EPRC), Faculty of Health, Edge Hill University and Regional Maxillofacial Unit, University Hospital Aintree; J.A. Kirton, BSc (Hons), MSc, PGCE, Research Assistant at Edge Hill University; M.R. O'Brien, PhD, Professor of Palliative and Supportive Care at Edge Hill University; A. Mediana, BSc nursing, Research Nurse at Aintree University Hospital NHS Trust; H. Frankland, BSc, Senior Research Nurse, Aintree University Hospital NHS Trust; H. Bruce, MBChB (Hons), Salford Royal Foundation Trust; T. Kennedy, MBChB, Core Trainee in Anaesthesia, Aintree University Hospital NHS Trust; S.N. Rogers, FDS, RCS, FRCS, MD, EPRC, Faculty of Health and Social Care, Edge Hill University and Consultant Regional Head and Neck Unit, University Hospital Aintree; R.J. Moots, BSc (Hons), MB, BS (Hons), PhD, FRCP, Professor of Rheumatology, Aintree University Hospital NHS Trust.
authors.forename: Derek
authors.initials: D
authors.lastname: Lowe
authors.affiliation: From the Department of Rheumatology, Aintree University Hospitals National Health Service (NHS) Trust, Liverpool; Edge Hill University, Ormskirk, UK.A.E. Ahmed, MBBS, MRCP, Consultant Rheumatologist and Acute Physician at Southport Hospital; D. Lowe, MSc, C.Stat., Medical Statistician at Evidence-Based Practice Research Centre (EPRC), Faculty of Health, Edge Hill University and Regional Maxillofacial Unit, University Hospital Aintree; J.A. Kirton, BSc (Hons), MSc, PGCE, Research Assistant at Edge Hill University; M.R. O'Brien, PhD, Professor of Palliative and Supportive Care at Edge Hill University; A. Mediana, BSc nursing, Research Nurse at Aintree University Hospital NHS Trust; H. Frankland, BSc, Senior Research Nurse, Aintree University Hospital NHS Trust; H. Bruce, MBChB (Hons), Salford Royal Foundation Trust; T. Kennedy, MBChB, Core Trainee in Anaesthesia, Aintree University Hospital NHS Trust; S.N. Rogers, FDS, RCS, FRCS, MD, EPRC, Faculty of Health and Social Care, Edge Hill University and Consultant Regional Head and Neck Unit, University Hospital Aintree; R.J. Moots, BSc (Hons), MB, BS (Hons), PhD, FRCP, Professor of Rheumatology, Aintree University Hospital NHS Trust.
authors.forename: Jennifer A
authors.initials: JA
authors.lastname: Kirton
authors.affiliation: From the Department of Rheumatology, Aintree University Hospitals National Health Service (NHS) Trust, Liverpool; Edge Hill University, Ormskirk, UK.A.E. Ahmed, MBBS, MRCP, Consultant Rheumatologist and Acute Physician at Southport Hospital; D. Lowe, MSc, C.Stat., Medical Statistician at Evidence-Based Practice Research Centre (EPRC), Faculty of Health, Edge Hill University and Regional Maxillofacial Unit, University Hospital Aintree; J.A. Kirton, BSc (Hons), MSc, PGCE, Research Assistant at Edge Hill University; M.R. O'Brien, PhD, Professor of Palliative and Supportive Care at Edge Hill University; A. Mediana, BSc nursing, Research Nurse at Aintree University Hospital NHS Trust; H. Frankland, BSc, Senior Research Nurse, Aintree University Hospital NHS Trust; H. Bruce, MBChB (Hons), Salford Royal Foundation Trust; T. Kennedy, MBChB, Core Trainee in Anaesthesia, Aintree University Hospital NHS Trust; S.N. Rogers, FDS, RCS, FRCS, MD, EPRC, Faculty of Health and Social Care, Edge Hill University and Consultant Regional Head and Neck Unit, University Hospital Aintree; R.J. Moots, BSc (Hons), MB, BS (Hons), PhD, FRCP, Professor of Rheumatology, Aintree University Hospital NHS Trust.
authors.forename: Mary R
authors.initials: MR
authors.lastname: O'Brien
authors.affiliation: From the Department of Rheumatology, Aintree University Hospitals National Health Service (NHS) Trust, Liverpool; Edge Hill University, Ormskirk, UK.A.E. Ahmed, MBBS, MRCP, Consultant Rheumatologist and Acute Physician at Southport Hospital; D. Lowe, MSc, C.Stat., Medical Statistician at Evidence-Based Practice Research Centre (EPRC), Faculty of Health, Edge Hill University and Regional Maxillofacial Unit, University Hospital Aintree; J.A. Kirton, BSc (Hons), MSc, PGCE, Research Assistant at Edge Hill University; M.R. O'Brien, PhD, Professor of Palliative and Supportive Care at Edge Hill University; A. Mediana, BSc nursing, Research Nurse at Aintree University Hospital NHS Trust; H. Frankland, BSc, Senior Research Nurse, Aintree University Hospital NHS Trust; H. Bruce, MBChB (Hons), Salford Royal Foundation Trust; T. Kennedy, MBChB, Core Trainee in Anaesthesia, Aintree University Hospital NHS Trust; S.N. Rogers, FDS, RCS, FRCS, MD, EPRC, Faculty of Health and Social Care, Edge Hill University and Consultant Regional Head and Neck Unit, University Hospital Aintree; R.J. Moots, BSc (Hons), MB, BS (Hons), PhD, FRCP, Professor of Rheumatology, Aintree University Hospital NHS Trust.
authors.forename: Ayren
authors.initials: A
authors.lastname: Mediana
authors.affiliation: From the Department of Rheumatology, Aintree University Hospitals National Health Service (NHS) Trust, Liverpool; Edge Hill University, Ormskirk, UK.A.E. Ahmed, MBBS, MRCP, Consultant Rheumatologist and Acute Physician at Southport Hospital; D. Lowe, MSc, C.Stat., Medical Statistician at Evidence-Based Practice Research Centre (EPRC), Faculty of Health, Edge Hill University and Regional Maxillofacial Unit, University Hospital Aintree; J.A. Kirton, BSc (Hons), MSc, PGCE, Research Assistant at Edge Hill University; M.R. O'Brien, PhD, Professor of Palliative and Supportive Care at Edge Hill University; A. Mediana, BSc nursing, Research Nurse at Aintree University Hospital NHS Trust; H. Frankland, BSc, Senior Research Nurse, Aintree University Hospital NHS Trust; H. Bruce, MBChB (Hons), Salford Royal Foundation Trust; T. Kennedy, MBChB, Core Trainee in Anaesthesia, Aintree University Hospital NHS Trust; S.N. Rogers, FDS, RCS, FRCS, MD, EPRC, Faculty of Health and Social Care, Edge Hill University and Consultant Regional Head and Neck Unit, University Hospital Aintree; R.J. Moots, BSc (Hons), MB, BS (Hons), PhD, FRCP, Professor of Rheumatology, Aintree University Hospital NHS Trust.
authors.forename: Helen
authors.initials: H
authors.lastname: Frankland
authors.affiliation: From the Department of Rheumatology, Aintree University Hospitals National Health Service (NHS) Trust, Liverpool; Edge Hill University, Ormskirk, UK.A.E. Ahmed, MBBS, MRCP, Consultant Rheumatologist and Acute Physician at Southport Hospital; D. Lowe, MSc, C.Stat., Medical Statistician at Evidence-Based Practice Research Centre (EPRC), Faculty of Health, Edge Hill University and Regional Maxillofacial Unit, University Hospital Aintree; J.A. Kirton, BSc (Hons), MSc, PGCE, Research Assistant at Edge Hill University; M.R. O'Brien, PhD, Professor of Palliative and Supportive Care at Edge Hill University; A. Mediana, BSc nursing, Research Nurse at Aintree University Hospital NHS Trust; H. Frankland, BSc, Senior Research Nurse, Aintree University Hospital NHS Trust; H. Bruce, MBChB (Hons), Salford Royal Foundation Trust; T. Kennedy, MBChB, Core Trainee in Anaesthesia, Aintree University Hospital NHS Trust; S.N. Rogers, FDS, RCS, FRCS, MD, EPRC, Faculty of Health and Social Care, Edge Hill University and Consultant Regional Head and Neck Unit, University Hospital Aintree; R.J. Moots, BSc (Hons), MB, BS (Hons), PhD, FRCP, Professor of Rheumatology, Aintree University Hospital NHS Trust.
authors.forename: Hannah
authors.initials: H
authors.lastname: Bruce
authors.affiliation: From the Department of Rheumatology, Aintree University Hospitals National Health Service (NHS) Trust, Liverpool; Edge Hill University, Ormskirk, UK.A.E. Ahmed, MBBS, MRCP, Consultant Rheumatologist and Acute Physician at Southport Hospital; D. Lowe, MSc, C.Stat., Medical Statistician at Evidence-Based Practice Research Centre (EPRC), Faculty of Health, Edge Hill University and Regional Maxillofacial Unit, University Hospital Aintree; J.A. Kirton, BSc (Hons), MSc, PGCE, Research Assistant at Edge Hill University; M.R. O'Brien, PhD, Professor of Palliative and Supportive Care at Edge Hill University; A. Mediana, BSc nursing, Research Nurse at Aintree University Hospital NHS Trust; H. Frankland, BSc, Senior Research Nurse, Aintree University Hospital NHS Trust; H. Bruce, MBChB (Hons), Salford Royal Foundation Trust; T. Kennedy, MBChB, Core Trainee in Anaesthesia, Aintree University Hospital NHS Trust; S.N. Rogers, FDS, RCS, FRCS, MD, EPRC, Faculty of Health and Social Care, Edge Hill University and Consultant Regional Head and Neck Unit, University Hospital Aintree; R.J. Moots, BSc (Hons), MB, BS (Hons), PhD, FRCP, Professor of Rheumatology, Aintree University Hospital NHS Trust.
authors.forename: Tom
authors.initials: T
authors.lastname: Kennedy
authors.affiliation: From the Department of Rheumatology, Aintree University Hospitals National Health Service (NHS) Trust, Liverpool; Edge Hill University, Ormskirk, UK.A.E. Ahmed, MBBS, MRCP, Consultant Rheumatologist and Acute Physician at Southport Hospital; D. Lowe, MSc, C.Stat., Medical Statistician at Evidence-Based Practice Research Centre (EPRC), Faculty of Health, Edge Hill University and Regional Maxillofacial Unit, University Hospital Aintree; J.A. Kirton, BSc (Hons), MSc, PGCE, Research Assistant at Edge Hill University; M.R. O'Brien, PhD, Professor of Palliative and Supportive Care at Edge Hill University; A. Mediana, BSc nursing, Research Nurse at Aintree University Hospital NHS Trust; H. Frankland, BSc, Senior Research Nurse, Aintree University Hospital NHS Trust; H. Bruce, MBChB (Hons), Salford Royal Foundation Trust; T. Kennedy, MBChB, Core Trainee in Anaesthesia, Aintree University Hospital NHS Trust; S.N. Rogers, FDS, RCS, FRCS, MD, EPRC, Faculty of Health and Social Care, Edge Hill University and Consultant Regional Head and Neck Unit, University Hospital Aintree; R.J. Moots, BSc (Hons), MB, BS (Hons), PhD, FRCP, Professor of Rheumatology, Aintree University Hospital NHS Trust.
authors.forename: Simon N
authors.initials: SN
authors.lastname: Rogers
authors.affiliation: From the Department of Rheumatology, Aintree University Hospitals National Health Service (NHS) Trust, Liverpool; Edge Hill University, Ormskirk, UK.A.E. Ahmed, MBBS, MRCP, Consultant Rheumatologist and Acute Physician at Southport Hospital; D. Lowe, MSc, C.Stat., Medical Statistician at Evidence-Based Practice Research Centre (EPRC), Faculty of Health, Edge Hill University and Regional Maxillofacial Unit, University Hospital Aintree; J.A. Kirton, BSc (Hons), MSc, PGCE, Research Assistant at Edge Hill University; M.R. O'Brien, PhD, Professor of Palliative and Supportive Care at Edge Hill University; A. Mediana, BSc nursing, Research Nurse at Aintree University Hospital NHS Trust; H. Frankland, BSc, Senior Research Nurse, Aintree University Hospital NHS Trust; H. Bruce, MBChB (Hons), Salford Royal Foundation Trust; T. Kennedy, MBChB, Core Trainee in Anaesthesia, Aintree University Hospital NHS Trust; S.N. Rogers, FDS, RCS, FRCS, MD, EPRC, Faculty of Health and Social Care, Edge Hill University and Consultant Regional Head and Neck Unit, University Hospital Aintree; R.J. Moots, BSc (Hons), MB, BS (Hons), PhD, FRCP, Professor of Rheumatology, Aintree University Hospital NHS Trust.
authors.forename: Robert J
authors.initials: RJ
authors.lastname: Moots
mesh_terms: D000328:Adult; D000368:Aged; D000554:Ambulatory Care Facilities; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D010045:Outpatients; D017060:Patient Satisfaction; D011788:Quality of Life; D012017:Referral and Consultation; D012216:Rheumatic Diseases / Q000628:therapy*; D012219:Rheumatology; D011795:Surveys and Questionnaires
keywords: HOLISTIC NEEDS ASSESSMENT; PATIENT CONCERNS INVENTORY; PATIENT SATISFACTION; UNMET NEEDS