Patient and caregiver involvement in the formulation of guideline questions

Session: 

Oral session: Patient or healthcare consumers involvement and shared decision-making (2)

Date: 

Sunday 16 September 2018 - 15:10 to 15:20

Location: 

Carrick 1

All authors in correct order:

Giordano A1, Köpke S2, Veronese S3, Rahn AC4, Kleiter I5, Basedow-Rajwich B5, Fornari A6, Battaglia MA7, Drulovic J8, Kooij L9, Koops J9, Mens J9, Meza Murillo ER10, Milanov I11, Milo R12, Patti F13, Pekmezovic T14, Sastre-Garriga J10, Vosburgh J15, Voltz R16, Bay J17, Oliver DJ18, Solari A6
1 Unit of Neuroepidemiology, Foundation IRCCS Neurological Institute C. Besta/Department of Psychology, University of Turin, Italy
2 Institute of Social Medicine and Epidemiology, University of Lübeck, Germany
3 FARO Charitable Foundation, Italy
4 Institut für Neuroimmunologie und Multiple Sklerose (INIMS), Universitätsklinikum Hamburg-Eppendorf, Germany
5 Kempfenhausen Centre for Treatment of Multiple Sclerosis, Marianne-Strauß-Klinik, Germany
6 Unit of Neuroepidemiology, Foundation IRCCS Neurological Institute C. Besta, Italy
7 Department of Life Sciences, University of Siena, Italy
8 Clinic of Neurology, CSS, Faculty of Medicine, University Hospital of Belgrade, Serbia
9 Nieuw Unicum, Netherlands
10 MS Centre of Catalonia (Cemcat), University Hospital Vall d'Hebron, Spain
11 Neurology Clinic, Medical University of Sofia, Bulgaria
12 Department of Neurology, Barzilai Medical Center, Israel
13 Neurology Clinic, Multiple Sclerosis Centre, University Hospital Policlinico Vittorio Emanuele, Italy
14 Institute of Epidemiology, Faculty of Medicine, University of Belgrade, Serbia
15 Israel Multiple Sclerosis Society,, Israel
16 Department of Palliative Medicine, University Hospital Cologne, Germany
17 Multiple Sclerosis International Federation, People with MS Advisory Committee, Denmark
18 The Tizard Centre, University of Kent, United Kingdom
Presenting author and contact person

Presenting author:

Andrea Giordano

Contact person:

Andrea Giordano
Abstract text
Background:
Patient and public involvement in clinical practice guideline development is recommended to increase the trustworthiness and relevance of guidelines.

Objective:
To engage multiple sclerosis (MS) patients and caregivers in the definition of key questions to be answered in the EAN Guideline on Palliative Care of People with Severe MS.

Methods:
We used a mixed-methods approach: an international, online survey launched by the national MS societies of eight countries (after pilot testing/debriefing on 20 MS patients and 18 caregivers) and focus group meetings (FGMs) of Italian and German MS patients and caregivers.

Results:
Of 1199 participants, 951 (79%) completed the whole online survey and we analysed the data of 934 participants from seven countries: 751 (80%) were MS patients (74% women, mean age 46.1) and 183 (20%) were caregivers (36% spouses/partners, 72% women, mean age 47.4). Participants agreed/strongly agreed on inclusion of the nine pre-specified topics (from 89% for 'advance care planning' to 98% for 'multidisciplinary rehabilitation'). Less than 5% replied "I prefer not to answer" to any topic. There were 569 free comments: 182 (32%) on the pre-specified topics, 227 (40%) on additional topics (16 guideline-pertinent) and 160 (28%) on outcomes. Five FGMs (three of MS patients, two of caregivers; overall 35 participants) corroborated the survey findings. In addition, they allowed the explanation of the guideline production process, and the exploration of patient-important outcomes and taxing issues.

Conclusions:
MS patient and caregiver involvement was resource and time-intensive, but rewarding. It was key for the formulation of the 10 guideline questions and for the identification of patient-important outcomes.

Patient or healthcare consumer involvement:
An initial and fundamental guideline phase is the formulation of the clinical questions and specifying the population, intervention, comparator and outcomes (PICO). For complex healthcare interventions, formulating PICO questions is more challenging than for questions about drug interventions and no guidance currently exists. The engagement of healthcare consumers is even more important to facilitate the operational definition of these questions.

Relevance to patients and consumers: 

We involved multiple sclerosis (MS) patients and caregivers in definition of the clinical questions of the EAN Guideline on Palliative Care of People with Severe MS. MS patient and caregiver involvement was resource and time intensive, but rewarding. It was key for the formulation of the 10 guideline questions, and for the identification of patient-important outcomes.