Article type
Year
Abstract
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.
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.