The research team will develop a data extraction table including items used in the Ollenschlaeger study (11), self-constructed items based on the RIGHT Checklist (9) as well as self-constructed items. Two members of the research team will then independently extract study data using this standardized data extraction table. Specifically, the data extraction table will contain the following items:
a)Name of the medical guideline (text)
b)Register number (number)
b)Date last edited (date)
d)Currently valid (yes/no)
e)Leading professional society in guideline development (text)
f)Classification of leading professional society to subject area (pediatric/surgical/nervous and emotional disorders/infections and environment – prevention and therapy/general and internal medicine/oncology without pediatrics/other)
g)Medical indication of guideline (acute/chronic/other)
h)Information on patient representative/patient advocate being a member of the guideline development group (yes/no)
i)Patient representative/ patient advocate was a member of the guideline development group (yes/no/not applicable)
j)Patient representative/patient advocate/family/patient representative and family/ patient advocate and family/unclear/not applicable
k)Patient representative/patient advocate had medical background (yes/no/unclear/not applicable)
l)Information on name of patient representative/patient advocate (yes/no/unclear/not applicable)
m)Information on name of patient organization(s) (yes/no/unclear/not applicable)
n)Name(s) of patient organization(s) (text)
o)Total number of members in guideline development group in the current version of guideline (number)
p)Total number of patient representatives/patient advocates in the current version of guideline (number)
q)Prior training for patient representative(s)/patient advocate(s) (yes/no/unclear/not applicable)
r)Payment for patient representative(s)/ patient advocate(s) (yes/no/unclear/not applicable)
s)Information on selection process of patient representative/patient advocate (yes/no/unclear/not applicable)
t)Information on role and responsibilities of patient representative/patient advocate, e.g. steering group, guideline development group, etc. (yes/no/unclear/not applicable)
u)Information on whether patients’ values and preferences were considered (yes/no/unclear/not applicable)
v)Methods to identify patients’ values and preferences (none/literature search/survey/focus group/patient representative or patient advocate in guideline group/any combination of these/all)
w)Explanation in case that patients’ values and preferences were not considered (yes/no/unclear/not applicable)
x)Information on whether patient representative/patient advocate was involved in decision-making/ had voting right (yes/no/unclear/not applicable)
y)Patient representative/patient advocate had voting right (yes/no/unclear/not applicable)
z)Patient representative/patient advocate exercised voting right (yes/no/unclear/not applicable)
aa)Information on limitations in the process of guideline development, e.g. if patients’ values and preferences were not sought (yes/no/unclear/not applicable)
bb)Information on how the validity of recommendations might have been affected in case that patients’ values and preferences were not sought (yes/no/unclear/not applicable)
cc)Availability of guideline methodology report (separate document/included in long version of guideline)
dd)Patient version of guideline available or planned as stated in guideline report (yes/no)
ee)Patient involvement in patient version of guideline (yes/no)
ff)Editorial coordination (text)
gg)Availability of the patient version of guideline on the internet (yes/no)
hh)Homepage of patient version of guideline (URL)