TY - JOUR
T1 - Service user- and carer-reported measures of involvement in mental health care planning
T2 - Methodological quality and acceptability to users
AU - Gibbons, Chris J.
AU - Bee, Penny E.
AU - Walker, Lauren
AU - Price, Owen
AU - Lovell, Karina
N1 - Publisher Copyright:
© 2014 Gibbons, Bee, Walker, Price and Lovell.
PY - 2014/12/11
Y1 - 2014/12/11
N2 - Background: Increasing service user and carer involvement in mental health care planning is a key healthcare priority but one that is difficult to achieve in practice. To better understand and measure user and carer involvement, it is crucial to have measurement questionnaires that are both psychometrically robust and acceptable to the end user. Methods: We conducted a systematic review using the terms "care plan$," "mental health," "user perspective$," and "user participation" and their linguistic variants as search terms. Databases were searched from inception to November 2012, with an update search at the end of September 2014. We included any articles that described the development, validation or use of a user and/or carer-reported outcome measures of involvement in mental health care planning. We assessed the psychometric quality of each instrument using the "Evaluating the Measurement of Patient-Reported Outcomes" (EMPRO) criteria. Acceptability of each instrument was assessed using novel criteria developed in consultation with a mental health service user and carer consultation group. Results: We identified eleven papers describing the use, development, and/or validation of nine user/carer-reported outcome measures. Psychometric properties were sparsely reported and the questionnaires met few service user/carer-nominated attributes for acceptability. Where reported, basic psychometric statistics were of good quality, indicating that some measures may perform well if subjected to more rigorous psychometric tests. The majority were deemed to be too long for use in practice. Discussion: Multiple instruments are available to measure user/carer involvement in mental health care planning but are either of poor quality or poorly described. Existing measures cannot be considered psychometrically robust by modern standards, and cannot currently be recommended for use. Our review has identified an important knowledge gap, and an urgent need to develop new user and carer measures of care-planning involvement.
AB - Background: Increasing service user and carer involvement in mental health care planning is a key healthcare priority but one that is difficult to achieve in practice. To better understand and measure user and carer involvement, it is crucial to have measurement questionnaires that are both psychometrically robust and acceptable to the end user. Methods: We conducted a systematic review using the terms "care plan$," "mental health," "user perspective$," and "user participation" and their linguistic variants as search terms. Databases were searched from inception to November 2012, with an update search at the end of September 2014. We included any articles that described the development, validation or use of a user and/or carer-reported outcome measures of involvement in mental health care planning. We assessed the psychometric quality of each instrument using the "Evaluating the Measurement of Patient-Reported Outcomes" (EMPRO) criteria. Acceptability of each instrument was assessed using novel criteria developed in consultation with a mental health service user and carer consultation group. Results: We identified eleven papers describing the use, development, and/or validation of nine user/carer-reported outcome measures. Psychometric properties were sparsely reported and the questionnaires met few service user/carer-nominated attributes for acceptability. Where reported, basic psychometric statistics were of good quality, indicating that some measures may perform well if subjected to more rigorous psychometric tests. The majority were deemed to be too long for use in practice. Discussion: Multiple instruments are available to measure user/carer involvement in mental health care planning but are either of poor quality or poorly described. Existing measures cannot be considered psychometrically robust by modern standards, and cannot currently be recommended for use. Our review has identified an important knowledge gap, and an urgent need to develop new user and carer measures of care-planning involvement.
KW - Carers
KW - Involvement
KW - Mental health
KW - Patient-centered care
KW - Questionnaire
KW - Review
UR - http://www.scopus.com/inward/record.url?scp=84961349748&partnerID=8YFLogxK
U2 - 10.3389/fpsyt.2014.00178
DO - 10.3389/fpsyt.2014.00178
M3 - Article
AN - SCOPUS:84961349748
SN - 1664-0640
VL - 5
JO - Frontiers in psychiatry
JF - Frontiers in psychiatry
IS - DEC
M1 - 178
ER -