Dataset Information

Monitoring and evaluation of patient involvement in clinical practice guideline development: lessons from the Multidisciplinary Guideline for Employment and Severe Mental Illness, the Netherlands.

ABSTRACT:

Objective

The aim of this study was to gain better insight into the quality of patient participation in the development of clinical practice guidelines and to contribute to approaches for the monitoring and evaluation of such initiatives. In addition, we explore the potential of a dialogue-based approach for reconciliation of preferences of patients and professionals in the guideline development processes.

Methods

The development of the Multidisciplinary Guideline for Employment and Severe Mental Illness in the Netherlands served as a case study. Methods for patient involvement in guideline development included the following: four patient representatives in the development group and advisory committee, two focus group discussions with patients, a dialogue session and eight case studies. To evaluate the quality of patient involvement, we developed a monitoring and evaluation framework including both process and outcome criteria. Data collection included observations, document analysis and semi-structured interviews (n = 26).

Results

The quality of patient involvement was enhanced using different methods, reflection of patient input in the guideline text, a supportive attitude among professionals and attention to patient involvement throughout the process. The quality was lower with respect to representing the diversity of the target group, articulation of the patient perspective in the GDG, and clarity and transparency concerning methods of involvement.

Conclusions

The monitoring and evaluation framework was useful in providing detailed insights into patient involvement in guideline development. Patient involvement was evaluated as being of good quality. The dialogue-based approach appears to be a promising method for obtaining integrated stakeholder input in a multidisciplinary setting.

SUBMITTER: van der Ham AJ

PROVIDER: S-EPMC5055266 | biostudies-literature | 2016 Apr

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Monitoring and evaluation of patient involvement in clinical practice guideline development: lessons from the Multidisciplinary Guideline for Employment and Severe Mental Illness, the Netherlands.

van der Ham Alida J AJ van Erp Nicole N Broerse Jacqueline E W JE

Health expectations : an international journal of public participation in health care and health policy 20150518 2

<h4>Objective</h4>The aim of this study was to gain better insight into the quality of patient participation in the development of clinical practice guidelines and to contribute to approaches for the monitoring and evaluation of such initiatives. In addition, we explore the potential of a dialogue-based approach for reconciliation of preferences of patients and professionals in the guideline development processes.<h4>Methods</h4>The development of the Multidisciplinary Guideline for Employment a ...[more]

PMID: 25980690

Similar Datasets

Project description:BACKGROUND:Patient and public involvement (PPI) is recognized as a key component of clinical practice guideline development with important implications for guideline implementability. The impact of PPI on guidelines, however, has not been rigorously assessed. Better understanding of the impact of PPI must start with guideline question formation, which drives all subsequent development steps. The aim of this study was to investigate the effect of PPI on guideline question formation and validate a conceptual model of patient and public contributions to guidelines. METHODS:For development of a clinical practice guideline on the topic of using amyloid positron emission tomography in the diagnosis of dementia, we convened two parallel guideline development groups, one with and one without patient representatives. Participating physicians were randomized to group assignment. Each group developed Population, Intervention, Comparator, Outcome, Time (PICOT) questions and identified key benefits and harms to incorporate in guideline development. Analysis included a descriptive comparison of proposed PICOT questions, benefits, and harms between groups and a qualitative analysis of discussion themes from audio recordings of the question development retreats. RESULTS:Proposed guideline questions, benefits, and harms were largely similar between groups, but only the experimental group proposed outcomes relating to development of cognitive impairment at specific time points and rate of progression. The qualitative analysis of the discussions occurring during guideline question development demonstrated key differences in group conduct and validated the proposed conceptual model of patient and public contributions to guidelines. PPI influenced the conduct of guideline development, scope, inclusion of patient-relevant topics, outcome selection, and planned approaches to recommendation development, implementation, and dissemination with implications for both guideline developers and the guideline development process. CONCLUSIONS:Evidence of how PPI impacts guideline development underscores the importance of engaging patient stakeholders in guideline development and highlights developer- and guideline-specific outcomes of PPI, both of which have implications for guideline implementation. It also raises the question of whether guidelines developed without such input are acceptable for use. PPI should be considered an essential element of trustworthy guideline development for purposes of development and funding.

Project description:BackgroundFinding work is a top priority for most people; however, this goal remains out of reach for the majority of individuals with a severe mental illness (SMI) who remain on benefits or are unemployed. Supported employment (SE) programs aimed at returning people with a severe mental illness to work are successful; however, they still leave a significant number of people with severe mental illness unemployed. Cognitive deficits are commonly found in SMI and are a powerful predictor of poor outcome. Fortunately, these deficits are amenable to treatment with cognitive remediation therapy (CRT) that significantly improves cognition in SMI. CRT combined with SE significantly increases the likelihood of individuals with severe mental illness obtaining and staying in work. However, the availability of CRT is limited in many settings.ObjectiveThe aim of this study was to examine whether Web-based CRT combined with a SE program can improve the rate return to work of people with severe mental illness.MethodsA total of 86 people with severe mental illness (mean age 39.6 years; male: n=55) who were unemployed and who had joined a SE program were randomized to either a Web-based CRT program (CogRem) or an Internet-based control condition (WebInfo). Primary outcome measured was hours worked over 6 months post treatment.ResultsAt 6 months, those participants randomized to CogRem had worked significantly more hours (P=.01) and had earned significantly more money (P=.03) than those participants randomized to the WebInfo control condition. No change was observed in cognition.ConclusionsThis study corroborates other work that has found a synergistic effect of combining CRT with a SE program and extends this to the use of Web-based CRT. The lack of any improvement in cognition obscures the mechanism by which an improved wage outcome for participants randomized to the active treatment was achieved. However, the study substantially lowers the barrier to the deployment of CRT with other psychosocial interventions for severe mental illness.Trial registrationAustralian and New Zealand Clinical Trials Registry (ANZCTR) 12611000849998; http://www.anzctr.org.au/TrialSearch.aspx?searchTxt=12611000849998&isBasic=True (Archived by WebCite at http://www.webcitation.org/6sMKwpeos).

Project description:BACKGROUND:The employment rate among people with severe mental illness has recently increased, though it is still low. The motivation to work appears to be an important role as an intermediate outcome measure in vocational rehabilitation programs. In addition, measuring the work motivation for people with severe mental illness appears to be essential to identify candidates who are likely to benefit and monitor candidates' motivation in a supported employment program. This study aimed to develop a new measure for assessing both intrinsic and extrinsic motivation to work among people with severe mental illness, as there are currently no well-established instruments of this kind. METHODS:A focus group interview and review of previous qualitative research were used to identify possible items for inclusion in the new scale. A provisional scale was constructed and further refined for content and format based on feedback from a researcher and also three peer workers with severe mental illness. The resulting provisional 38-item version of the scale was completed by 136 respondents with severe mental illness, and we performed exploratory factor analysis to identify latent constructs within the new measure. The finalized scale was analyzed for test-retest reliability, internal consistency, and convergent validity. RESULT:An exploratory factor analysis yielded a four-factor scale with 23 items. The finalized 23 items had high internal consistency (Cronbach's alpha = 0.91) and relatively high test-retest reliability (ICC = 0.83). The four subscales had fair internal consistency (Cronbach's alpha ? 0.69) and good test-retest reliability (ICC ? 0.61). Convergent validity was weakly supported by the significant positive correlations with the overall question on motivation to work (r ? 0.19, p < 0.01). Besides these correlations, only the "Pressure from others" subscale was negatively and significantly correlated with the negative symptoms evaluated using the Positive and Negative Syndrome Scale (r = -0.18, p = 0.04). CONCLUSIONS:This study used factor analysis to develop a new multidimensional scale assessing motivation for competitive employment among persons with severe mental illness. The scale showed acceptable levels of reliability and factor-based and convergent validity. The new measure can be used for measuring the motivation for competitive employment among people with severe mental illness, and it would be useful to identify candidates who are likely to benefit from a certain supported employment program, and to monitor interim progress of the state of participants' motivation in a program.

Dataset Information

Monitoring and evaluation of patient involvement in clinical practice guideline development: lessons from the Multidisciplinary Guideline for Employment and Severe Mental Illness, the Netherlands.

Objective

Methods

Results

Conclusions

Publications

Monitoring and evaluation of patient involvement in clinical practice guideline development: lessons from the Multidisciplinary Guideline for Employment and Severe Mental Illness, the Netherlands.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets