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Service user- and carer-reported measures of involvement in mental health care planning: methodological quality and acceptability to users.

ABSTRACT: 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.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.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.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.

SUBMITTER: Gibbons CJ

PROVIDER: S-EPMC4263079 | biostudies-other | 2014

REPOSITORIES: biostudies-other

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Service user- and carer-reported measures of involvement in mental health care planning: methodological quality and acceptability to users.

Gibbons Chris J CJ Bee Penny E PE Walker Lauren L Price Owen O Lovell Karina K

Frontiers in psychiatry 20141211

<h4>Background</h4>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.<h4>Methods</h4>We conducted a systematic review using the terms "care plan$," "mental health," "user perspective$," and "user participation" and ...[more]

PMID: 25566099

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Project description:BackgroundPeople living with serious mental health conditions experience increased morbidity due to physical health issues driven by medication side-effects and lifestyle factors. Coordinated mental and physical healthcare delivered in accordance with a care plan could help to reduce morbidity and mortality in this population. Efforts to develop new models of care are hampered by a lack of validated instruments to accurately assess the extent to which mental health services users and carers are involved in care planning for physical health.ObjectiveTo develop a brief and accurate patient-reported experience measure (PREM) capable of assessing involvement in physical health care planning for mental health service users and their carers.MethodsWe employed psychometric and statistical techniques to refine a bank of candidate questionnaire items, derived from qualitative interviews, into a valid and reliable measure involvement in physical health care planning. We assessed the psychometric performance of the item bank using modern psychometric analyses. We assessed unidimensionality, scalability, fit to the partial credit Rasch model, category threshold ordering, local dependency, differential item functioning, and test-retest reliability. Once purified of poorly performing and erroneous items, we simulated computerized adaptive testing (CAT) with 15, 10 and 5 items using the calibrated item bank.ResultsIssues with category threshold ordering, local dependency and differential item functioning were evident for a number of items in the nascent item bank and were resolved by removing problematic items. The final 19 item PREM had excellent fit to the Rasch model fit (x2 = 192.94, df = 1515, P = .02, RMSEA = .03 (95% CI = .01-.04). The 19-item bank had excellent reliability (marginal r = 0.87). The correlation between questionnaire scores at baseline and 2-week follow-up was high (r = .70, P < .01) and 94.9% of assessment pairs were within the Bland Altman limits of agreement. Simulated CAT demonstrated that assessments could be made using as few as 10 items (mean SE = .43).DiscussionWe developed a flexible patient reported outcome measure to quantify service user and carer involvement in physical health care planning. We demonstrate the potential to substantially reduce assessment length whilst maintaining reliability by utilizing CAT.

Project description:BackgroundLong duration of untreated psychosis (DUP) is associated with poor outcomes and low quality of life at first contact with mental health services. However, long DUP is common. In order to inform initiatives to reduce DUP, we investigated service users' and carers' experiences of the onset of psychosis and help-seeking in two multicultural, inner London boroughs and the roles of participants' social networks in their pathways to care.MethodIn-depth interviews were conducted with service users and carers from an early intervention service in North London, purposively sampled to achieve diversity in sociodemographic characteristics and DUP and to include service users in contact with community organisations during illness onset. Interviews covered respondents' understanding of and reaction to the onset of psychosis, their help-seeking attempts and the reactions of social networks and health services. Thematic analysis of interview transcripts was conducted.ResultsMultiple barriers to prompt treatment included not attributing problems to psychosis, worries about the stigma of mental illness and service contact, not knowing where to get help and unhelpful service responses. Help was often not sought until crisis point, despite considerable prior distress. The person experiencing symptoms was often the last to recognise them as mental illness. In an urban UK setting, where involved, workers in non-health community organisations were frequently willing to assist help-seeking but often lacked skills, time or knowledge to do so.ConclusionEven modest periods of untreated psychosis cause distress and disruption to individuals and their families. Early intervention services should prioritise early detection. Initiatives aimed at reducing DUP may succeed not by promoting swift service response alone, but also by targeting delays in initial help-seeking. Our study suggests that strategies for doing this may include addressing the stigma associated with psychosis and community education regarding symptoms and services, targeting not only young people developing illness but also a range of people in their networks, including staff in educational and community organisations. Initiatives to enhance the effective involvement of staff in community organisations working with young people in promoting help-seeking merit research.

Dataset Information

Service user- and carer-reported measures of involvement in mental health care planning: methodological quality and acceptability to users.

Publications

Service user- and carer-reported measures of involvement in mental health care planning: methodological quality and acceptability to users.

Similar Datasets

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