Mariska Scheffer
Publicatie
Datum
11-07-2025
Development of a question prompt list for age-related macular degeneration care.
Scheffer, M., Menting, J., Rausch, P., Boeije, H., Nispen, R. van, Dulmen, S. van Development of a question prompt list for age-related macular degeneration care. Patient Education and Counseling: 2025. 137, suppl. 1, Meeting abstract of the ICCH 9-13th September 2024, Zaragoza, Spain.
ABSTRACT:
Background
Age-related macular degeneration (AMD) stands as a predominant cause of irreversible visual impairment among individuals aged 50 and older. Prior research has highlighted the need for improvement in communication between patients and healthcare professionals (HCP). This study is undertaken with the objective of developing and assessing the communication tool ’Talking About Macular Degeneration’. The tool includes a structured list of sample questions about AMD, also known as a Question Prompt List (QPL).
Methods
The research commenced by (1) comprehensively reviewing 31 international studies to understand patients’ experiences, needs, and preferences concerning patient-provider communication. Following this (2) survey research was undertaken, involving 162 Dutch patients with AMD, to gather additional data. In the developmental phase (3) three focus groups including patients, their informal caregivers and HCPs (n=18), contributed to creating a prototype tool. The QPL was refined through cognitive interviews (n=30). In the current phase (4) the study analyzes the tool’s impact using video recordings of consultations.
Findings
Study findings confirm a gap in communication needs, as patients rated their experiences with patient-provider communication lower than their expectations. Most wish to receive (more) information on AMD-related costs, treatment, future perspectives and coping with negative emotions. More than half desire more involvement in decision-making. To aid consultation, most patients preferred to be prompted with a list of sample questions to be used in the conversation with their HCP. The refinement of the QPL led to the inclusion of five main themes: questions regarding diagnosis, treatment options, prevention, daily life and support.
Discussion
Findings underscore the imperative for enhancing communication in AMD care. The QPL stands out as a potential solution, aiding patients in formulating inquiries and offering support to HCP in guiding patients effectively. Improving patient-provider communication holds the potential to elevate the overall quality of care in AMD management.
Background
Age-related macular degeneration (AMD) stands as a predominant cause of irreversible visual impairment among individuals aged 50 and older. Prior research has highlighted the need for improvement in communication between patients and healthcare professionals (HCP). This study is undertaken with the objective of developing and assessing the communication tool ’Talking About Macular Degeneration’. The tool includes a structured list of sample questions about AMD, also known as a Question Prompt List (QPL).
Methods
The research commenced by (1) comprehensively reviewing 31 international studies to understand patients’ experiences, needs, and preferences concerning patient-provider communication. Following this (2) survey research was undertaken, involving 162 Dutch patients with AMD, to gather additional data. In the developmental phase (3) three focus groups including patients, their informal caregivers and HCPs (n=18), contributed to creating a prototype tool. The QPL was refined through cognitive interviews (n=30). In the current phase (4) the study analyzes the tool’s impact using video recordings of consultations.
Findings
Study findings confirm a gap in communication needs, as patients rated their experiences with patient-provider communication lower than their expectations. Most wish to receive (more) information on AMD-related costs, treatment, future perspectives and coping with negative emotions. More than half desire more involvement in decision-making. To aid consultation, most patients preferred to be prompted with a list of sample questions to be used in the conversation with their HCP. The refinement of the QPL led to the inclusion of five main themes: questions regarding diagnosis, treatment options, prevention, daily life and support.
Discussion
Findings underscore the imperative for enhancing communication in AMD care. The QPL stands out as a potential solution, aiding patients in formulating inquiries and offering support to HCP in guiding patients effectively. Improving patient-provider communication holds the potential to elevate the overall quality of care in AMD management.
ABSTRACT:
Background
Age-related macular degeneration (AMD) stands as a predominant cause of irreversible visual impairment among individuals aged 50 and older. Prior research has highlighted the need for improvement in communication between patients and healthcare professionals (HCP). This study is undertaken with the objective of developing and assessing the communication tool ’Talking About Macular Degeneration’. The tool includes a structured list of sample questions about AMD, also known as a Question Prompt List (QPL).
Methods
The research commenced by (1) comprehensively reviewing 31 international studies to understand patients’ experiences, needs, and preferences concerning patient-provider communication. Following this (2) survey research was undertaken, involving 162 Dutch patients with AMD, to gather additional data. In the developmental phase (3) three focus groups including patients, their informal caregivers and HCPs (n=18), contributed to creating a prototype tool. The QPL was refined through cognitive interviews (n=30). In the current phase (4) the study analyzes the tool’s impact using video recordings of consultations.
Findings
Study findings confirm a gap in communication needs, as patients rated their experiences with patient-provider communication lower than their expectations. Most wish to receive (more) information on AMD-related costs, treatment, future perspectives and coping with negative emotions. More than half desire more involvement in decision-making. To aid consultation, most patients preferred to be prompted with a list of sample questions to be used in the conversation with their HCP. The refinement of the QPL led to the inclusion of five main themes: questions regarding diagnosis, treatment options, prevention, daily life and support.
Discussion
Findings underscore the imperative for enhancing communication in AMD care. The QPL stands out as a potential solution, aiding patients in formulating inquiries and offering support to HCP in guiding patients effectively. Improving patient-provider communication holds the potential to elevate the overall quality of care in AMD management.
Background
Age-related macular degeneration (AMD) stands as a predominant cause of irreversible visual impairment among individuals aged 50 and older. Prior research has highlighted the need for improvement in communication between patients and healthcare professionals (HCP). This study is undertaken with the objective of developing and assessing the communication tool ’Talking About Macular Degeneration’. The tool includes a structured list of sample questions about AMD, also known as a Question Prompt List (QPL).
Methods
The research commenced by (1) comprehensively reviewing 31 international studies to understand patients’ experiences, needs, and preferences concerning patient-provider communication. Following this (2) survey research was undertaken, involving 162 Dutch patients with AMD, to gather additional data. In the developmental phase (3) three focus groups including patients, their informal caregivers and HCPs (n=18), contributed to creating a prototype tool. The QPL was refined through cognitive interviews (n=30). In the current phase (4) the study analyzes the tool’s impact using video recordings of consultations.
Findings
Study findings confirm a gap in communication needs, as patients rated their experiences with patient-provider communication lower than their expectations. Most wish to receive (more) information on AMD-related costs, treatment, future perspectives and coping with negative emotions. More than half desire more involvement in decision-making. To aid consultation, most patients preferred to be prompted with a list of sample questions to be used in the conversation with their HCP. The refinement of the QPL led to the inclusion of five main themes: questions regarding diagnosis, treatment options, prevention, daily life and support.
Discussion
Findings underscore the imperative for enhancing communication in AMD care. The QPL stands out as a potential solution, aiding patients in formulating inquiries and offering support to HCP in guiding patients effectively. Improving patient-provider communication holds the potential to elevate the overall quality of care in AMD management.
