The Development of a Patient Concerns Inventory for People Diagnosed with Airway Stenosis. The aim is to develop a new tool called the Patient Concerns Inventory (PCI) for adults with a condition called airway stenosis (AS) which makes breathing very difficult. This tool will help patients to share concerns effectively at their medical appointments and help their doctors to shape appointments based on patient-identified priorities.
The lead in this collaboration is Dr. Justin Roe, Clinical Service Lead - Speech & Language Therapy (Airway/ Ear, Nose and Throat Service), Imperial College Healthcare NHS Trust Honorary Lecturer - Division of Surgery, Department of Surgery and Cancer, Faculty of Medicine, Imperial College London and Joint Head - Department of Speech & Language Therapy The Royal Marsden NHS Foundation Trust. firstname.lastname@example.org
Kanatas A, Lowe D, Velikova G, Roe B, Horgan K, Shaw RJ, Rogers SN. Issues patients would like to discuss at their review consultation in breast cancer clinics - a cross-sectional survey. Tumori. 2014 Sep-Oct;100(5):568-79. doi: 10.1700/1660.18184.Abstract
Aims and background:
In breast cancer (BC) there are different therapies available with different side effects affecting the health-related quality of life (HRQOL) of patients. Here we report a novel tool, the BC-specific Patient Concerns Inventory (PCI). This work includes a survey that is part of the validation process to allow a larger cohort and comparisons with clinical characteristics. We report the concerns that BC patients would like to discuss in the outpatient clinic - using the PCI - and also their choice of multidisciplinary team members they would like to see.
Methods and study design:
We carried out a cross-sectional survey - using the BC-specific PCI, the EORTC QLQ-C30 and the EORTC BC QLQ-BR23 - of patients who had completed their initial treatment and were attending a review outpatient clinic. 249 patients were recruited from February to July 2012. Results. Survey responses were obtained from 80% (200/249). The three most frequent items were fear of cancer coming back (62%, 124), breast sensitivity/pain (46%, 92), and fatigue/tiredness and low energy levels overall (46%, 92). The most frequently selected members of the multidisciplinary team that patients wished to see were the breast care nurse (46%, 92), the medical oncologist (28%, 55) and the psychologist (20%, 40).
The PCI provides the opportunity for multiprofessional engagement across a range of issues specific to BC. It can identify issues relating to physical, psychological, sexual and social functioning, as well as issues relating to body image and lifestyle.
There are two initiatives in PCI elderly.
Firstly there have been pilot developmental work in collaboration with Dr Daniel Harman (Daniel.Harman@hey.nhs.uk) and Mr Ian Harvey (email@example.com) at Hull through a project ‘Health Needs Assessment within Hull CCG: Development & Trial of the Medical Elderly Patient Concerns Inventory (ME-PCI) in the Context of Supporting Health Commissioning’. The literature review and focus groups identified slight differences in a small number of items that led to the generation of three PCIs -elderly: Collapse Patient Concerns Inventory, Gastroenterology Patient Concerns Inventory, Neuropsychiatric Patient Concerns Inventory.
Secondly, the stream of work is at Aintree University Hospital through the leadership of Dr Akpan, Consultant in Community Geriatric Medicine. This involves developing a PCI-frail older adults and this can be linked with the ICHOM Standard Set for Older person. ASAN.AKPAN@aintree.nhs.uk
When diagnosed with cancer there is potentially a lot of information to take in. Some patients and family/carers like relatively little information other much more. It is very hard to get the amount of information right and it needs to be tailored for each individual patient. Also the information needs to be at the 'right' time for the patient and this can be both before treatment and at any time after treatment. Also we need to get the context and format of the information right, having said that there is arguably nothing better than one to one advice with the clinical team (consultant oncologist, consultant surgeon, Clinical Nurse Specialist, Emotional Support therapist, Clinical Psychologist, Speech and Language Therapist, Dietician, Oral Rehabilitation/ dentist etc. Ideally the information needs to be specific as possible to the individual, the cancer site, type, and treatment.
To try to help facilitate the sharing of information with patients at the most appropriate time for them we are piloting a PCI-pre-treatment (diagnosis). This can be given to the patient at diagnosis and used as often as necessary by the patient in any of the subsequent consultations / hospital visits.
The PCI HaNC-PT consists of 57 clinical and other items which patients are asked to select to help guide their outpatient consultation through the symptoms and problems that they are experiencing following treatment for head and neck cancer. It helps to direct the consultation and can act as a trigger for on-ward referral for areas of patient concern.
PCI for Head and Neck Cancer (after diagnosis) laid out for use with Holistic Needs Assessment
PCI for Head and Neck Cancer (post treatment) laid out for use with Holistic Needs Assessment
The PCI-MND is being developed in collaboration with Professor Mary O'brien, Faculty of Health & Social care, Edge Hill University and Dr Suresh Chheti, Consultant in Neurology, Lancashire Teaching Hospitals NHS Foundation.
Brain tumour patients may struggle to express their concerns in the outpatient clinic, creating a physician-focused rather than a shared agenda. We created a simple, practical brain-tumour-specific holistic needs assessment (HNA) tool for use in the neuro-oncology outpatient clinic.
We posted the brain tumour Patient Concerns Inventory (PCI) to a consecutive sample of adult brain tumour attendees to a neuro-oncology outpatient clinic. Participants brought the completed PCI to their clinic consultation. Patients and staff provided feedback.
Seventy seven patients were eligible and 53 participated (response rate = 68%). The PCI captured many problems absent from general cancer checklists. The five most frequent concerns were fatigue, fear of tumour coming back, memory, concentration, and low mood. Respondents used the PCI to formulate 105 specific questions, usually about the meaning of physical or psychological symptoms. Patients and staff found the PCI to be useful, and satisfaction with the instrument was high.
This study demonstrates the clinical utility of the brain tumour PCI in a neuro-oncology clinic. The combination of a brain-tumour-specific concerns checklist and an intervention to focus patient agenda creates a simple and efficient HNA tool.
Rooney AG, Netten A, McNamara S, Erridge S, Peoples S, Whittle I, Hacking B, Grant R. Assessment of a brain-tumour-specific Patient Concerns Inventory in the neuro-oncology clinic. Support Care Cancer. 2014 Apr;22(4):1059-69. doi: 10.1007/s00520-013-2058-2. Epub 2013 Nov 29.
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.
There is on-going work to develop and test the use of the PCI-Rheumatology in routine clinics At Aintree University Hospital
Prof Robert Moots firstname.lastname@example.org
Ahmed AE, Lowe D, Kirton JA, O'Brien MR, Mediana A, Frankland H, Bruce H, Kennedy T, Rogers SN, Moots RJ. Development of a Rheumatology-specific Patient Concerns Inventory and Its Use in the Rheumatology Outpatient Clinic Setting. J Rheumatol. 2016 Apr;43(4):779-87. doi: 10.3899/jrheum.150068. Epub 2016 Feb 15.
Moots RJ, Rogers SN. Rheumatology today and in the future. Rheumatology (Oxford). 2011 Dec;50(12):2149-50. doi: 10.1093/rheumatology/ker386.
PCI-Speech and Language Therapy is being developed and piloted at Alder Hey Hospital in collaboration with Sheena Round
There are two modules. One for general use and the other for use in babies. The initiative is part of the Cheshire & Merseyside Hearing Impairment Network Speech and Language Therapy Service.
A Stroke PCI has been developed through a review of key literature reporting patient concerns and through input from academic and healthcare professionals. The next phase of work will gather patient and carer feedback on the tool and subsequently explore its acceptability and usability in a pilot study.
Dr Brigit Chesworth (BChesworth@uclan.ac.uk)
Dr Liz Lightbody (CELightbody@uclan.ac.uk)
Prof Caroline Watkins (CLWatkins@uclan.ac.uk)
The Patient Concerns Inventory started out at University Hospital Aintree as a tool for patients with Head & Neck Cancer. Since then the PCI concept has been taken up by numerous collaborators and now PCI tools are being developed in a number of different areas.
This page contains information about some of the various PCI versions developed for different specialty fields.