A patient-centered network approach to multidisciplinary-guideline development: a process evaluation

Abstract

BackgroundGuideline development and uptake are still suboptimal; they focus on clinical aspects of diseases rather than on improving the integration of care. We used a patient-centered network approach to develop five harmonized guidelines (one multidisciplinary and four monodisciplinary) around clinical pathways in fertility care. We assessed the feasibility of this approach with a detailed process evaluation of the guideline development, professionals’ experiences, and time invested.MethodsThe network structure comprised the centrally located patients and the steering committee; a multidisciplinary guideline development group (gynecologists, physicians, urologists, clinical embryologists, clinical chemists, a medical psychologist, an occupational physician, and two patient representatives); and four monodisciplinary guideline development groups. The guideline development addressed patient-centered, organizational, and medical-technical key questions derived from interviews with patients and professionals. These questions were elaborated and distributed among the groups. We evaluated the project performance, participants’ perceptions of the approach, and the time needed, including time for analysis of secondary sources, interviews with eight key figures, and a written questionnaire survey among 35 participants.ResultsWithin 20 months, this approach helped us develop a multidisciplinary guideline for treating infertility and four related monodisciplinary guidelines for general infertility, unexplained infertility, male infertility, and semen analysis. The multidisciplinary guideline included recommendations for the main medical-technical matters and for organizational and patient-centered issues in clinical care pathways. The project was carried out as planned except for minor modifications and three extra consensus meetings. The participants were enthusiastic about the approach, the respect for autonomy, the project coordinator’s role, and patient involvement. Suggestions for improvement included timely communication about guideline formats, the timeline, participants’ responsibilities, and employing a librarian and more support staff. The 35 participants spent 4497 hours in total on this project.ConclusionsThe novel patient-centered network approach is feasible for simultaneously and collaboratively developing a harmonized set of multidisciplinary and monodisciplinary guidelines around clinical care pathways for patients with fertility problems. Further research is needed to compare the efficacy of this approach with more traditional approaches.

Patient and public involvement in the development of clinical practice guidelines: a scoping review

“…Among the 109 full-text articles that were screened, 62 were excluded because they were not primary studies (11/62), did not relate to developing a CPG (30/62), did not include PPI (7/62), were abstracts only (11/62) or were a duplicate publication (3/62). Forty-seven studies were included in references 29–75 (see figure 1).…”

Patient involvement in quality management: rationale and current status

“…PPI in this regard is well established in the context of guideline development and of particular relevance to make sure that guidelines reflect not only clinical aspects of care and, but address the complex needs of chronically ill patients and refer to aspects of continuity of care and service integration. For example, Den Breejen et al report on the experience of developing guidelines around clinical pathways in fertility care that involve a multidisciplinary group and patient representatives (Den Breejen et al, 2014). According to their study, the professionals described the involvement of patients as "valuable (e.g.…”

Evaluating the Acceptability, Feasibility, and Outcomes of Two Methods Involving Patients With Disability in Developing Clinical Guidelines: Crossover Pilot Study

“…In our study, the focus group and wiki methods were both acceptable, and they presented distinctive features (eg, social aspects, inspiring discussions for focus groups, no time constraint, geographically accessible, and easier concentration for the wiki method) that are susceptible to accommodate individuals with TBI who experience various disabilities. Our study shows that the little training required for focus group participation, the possibility to clarify the technical or scientific language used, and the positive feelings that participation can elicit in a social group might counter important support needs [ 40 ], such as patient representatives’ feelings of isolation [ 9 ], and difficulty with medical terminology [ 41 , 42 ] which have been identified as obstacles to PPI in the literature.…”

“…As synthesized in a recent scoping review by Kim et al [ 7 ], a large number of methods of PPI in CPG production are reported in the literature, combined or not, such as surveys [ 8 ], wikis, focus groups [ 9 ], in-depth interviews [ 10 ], online Delphi methods [ 11 , 12 ], and workshops [ 13 ]. PPI experiences are associated with a range of challenges, described by Armstrong et al [ 14 ] as a lack of clarity about the roles and tasks of patients in the CPG development process; limited resources for supporting patients; integrating service user input with supporting evidence from the literature in the CPG; ensuring that participating service users represent the views of service users as a group; the ability of service users to voice their concerns in the context of CPG development; recruitment difficulties; representativeness of selected participants; training and support needs of patient and population; patient representatives’ feelings of isolation; and difficulty with medical (or scientific) terminology, and systematic review process [ 4 , 14 ].…”