@article{nokey,

title = {Patient engagement in care: A scoping review of recently validated tools assessing patients' and healthcare professionals' preferences and experience},

author = {Clavel N, Paquette J, Dumez V, Del Grande C, Ghadiri D, Pomey MP and Normandin L.},

url = {https://onlinelibrary.wiley.com/doi/10.1111/hex.13344},

year  = {2021},

date = {2021-08-16},

abstract = {Background: Patient engagement in care is a priority and a key component of clinical practice. Different approaches to care have been introduced to foster patient engagement. There is a lack of a recent review on tools for assessing the main concepts and dimensions related to patient engagement in care.



Objective: Our scoping review sought to map and summarize recently validated tools for assessing various concepts and dimensions of patient engagement in care.



Search Strategy: A scoping review of recent peer-reviewed articles describing tools that assess preferences in and experience with patient engagement in care was conducted in four databases (Ovid Medline, Ovid EMBASE, Cochrane Database of Systematic Reviews, CINAHL-EBSCO). We adopted a broad definition based on the main concepts of patient engagement in care: patient-centredness, empowerment, shared decision-making and partnership in care.



Main Results: Of 2161 articles found, 16, each describing a different tool, were included and analysed. Shared decision-making and patient-centredness are the two main concepts evaluated, often simultaneously in most of the tools. Only four scales measure patient-centredness, empowerment and shared decision-making at the same time, but no tool measures the core dimensions of partnership in care. Most of the tools did not include patients in their development or validation or just consulted them during the validation phase.



Discussion and Conclusion: There is no tool coconstructed with patients from development to validation, which can be used to assess the main concepts and dimensions of patient engagement in care at the same time.



Patient and Public Contribution: This manuscript was prepared with a patient expert who is one of the authors. Vincent Dumez, who is a patient expert and codirector of the Center of Excellence on Partnership with Patients and the Public, has contributed to the preparation of the manuscript.},

note = {Source: Published in Health Expectations},

keywords = {Health Communication},

pubstate = {published},

tppubtype = {article}

}

@article{nokey,

title = {People with Parkinson’s Disease: What Symptoms Do They Most Want to Improve and How Does This Change with Disease Duration?},

author = {Port, Rebecca J. | Rumsby, Martin | Brown, Graham | Harrison, Ian F. | Amjad, Anneesa | Bale, Claire J.},

url = {https://journals.sagepub.com/doi/10.3233/JPD-202346},

year  = {2021},

date = {2021-01-11},

urldate = {2021-01-11},

abstract = {Background: Parkinson’s disease (PD) is a neurodegenerative condition with a diverse and complex pattern of motor and non-motor symptoms which change over time with disease duration.



Objective: The aims of the present study were to discover what symptoms matter most to people with the condition and to examine how these priorities change with disease duration.



Methods: A simple free-text online survey (using SmartSurvey) was developed by Parkinson’s UK, which asked participants to identify up to three aspects of the condition they would most like to see improvement in.



Results: 790 people participated reporting 2,295 issues related to PD which were grouped into 24 broad symptom domains. Of these, 1,358 (59.1%) were categorised as motor symptoms, 859 (37.4%) as non-motor issues and 78 (3.4%) as medication problems. This study reveals how certain features of PD become more or less important to patients as the condition progresses. Non-motor symptoms were highly cited from the very earliest stages of PD. Problems with walking, balance and falls, speech problems, freezing and dyskinesia become increasingly important as the condition progresses whereas tremor, stiffness and psychological health become decreasingly important as the condition progresses.



Conclusions: The data suggest that the priorities of people affected by PD for improving life are personal and change with duration of the condition. These findings have implications for developing person-centred management and care, as well as for directing future research to improve quality of life.},

note = {Source: Published in Journal of Parkinson's Disease, Volume 11, Issue 2

},

keywords = {Health Communication},

pubstate = {published},

tppubtype = {article}

}

@article{nokey,

title = {Patient Centricity in Patient Preference Studies: The Patient Perspective},

author = {van Overbeeke E., Vanbinst I., Jimenez-Moreno AC. and Huys I.},

url = {https://www.frontiersin.org/journals/medicine/articles/10.3389/fmed.2020.00093/full},

year  = {2020},

date = {2020-03-20},

abstract = {Objectives: A factor contributing to the value of patient preference studies is patient centricity. This study aimed to explore how patients want to be involved in the design and conduct of patient preference studies. In addition, we investigated patients' expectations regarding the communication of study results back to patients.



Methods: Semi-structured interviews were conducted with patient representatives within three different disease areas: rheumatic diseases, cancer, and neuromuscular disorders. For each disease area, interviews were conducted with interviewees from Belgium, the Netherlands and the United Kingdom. Interviews followed a predefined interview guide covering topics relating to timing, level, and requirements for patient involvement in patient preference studies, as well as communication of results. Interviews were audio-recorded, transcribed and analyzed using framework analysis in NVivo 12.



Results: A total of 14 interviews were conducted. Some interviewees believed that patients should be involved in all steps of a patient preference study. Patient involvement seemed most valuable during the design phase to support defining research questions and instrument design. During analysis, patients can be involved for optimal interpretation of results. Most interviewees mentioned that patient involvement should be on the level of advice or collaboration, not control. Interviewees expressed requirements for patient involvement relating to the knowledge of the involved patient, time investment, compensation and other incentives. Regarding communication of results, most interviewees wished to receive a brief and lay summary of the results, followed by a detailed explanation of both individual and average results accompanied by visuals.



Conclusions: Patient involvement in patient preference studies could increase question comprehension by study participants and ensure correct interpretation of results by researchers. Patients want to be involved as advisors or collaborators, and considering their personal situation as well as establishing agreements on roles, time involvement and compensation early on will result in a most optimal partnership.},

note = {Source: Published in Frontiers},

keywords = {Health Communication},

pubstate = {published},

tppubtype = {article}

}