Understanding healthcare communication in age-related macular degeneration care: A mixed-methods review of patients’ perspectives

Mariska Scheffer; Juliane Menting; Hennie Boeije; Ruth van Nispen; Sandra van Dulmen

doi:10.1016/j.survophthal.2024.03.002

Understanding healthcare communication in age-related macular degeneration care: A mixed-methods review of patients’ perspectives

Mariska Scheffer, Juliane Menting, Hennie Boeije, Ruth van Nispen, Sandra van Dulmen

Research output: Contribution to Journal › Review article › Academic › peer-review

Abstract

Age-related macular degeneration (AMD) is the most common cause of irreversible visual impairment among people aged 50 years and older. Earlier research has indicated that the communication process between patients and healthcare professionals (HCPs) leaves considerable room for improvement in AMD care. Effective communication is essential to enhance trust in the professional and understanding of the diagnosis and treatment, and decrease anxiety and stress related to illness. We review patients’ experiences, needs and preferences regarding information provision, communication style of the HCP and shared decision-making. We conducted a systematic search in PubMed, Embase, PsycINFO, CINAHL and Web of Science. Study quality was assessed using standard checklists of quality measures. Our search returned 31 eligible articles. Findings indicated current deficits in information provision for people with AMD. Patients were often ill-informed regarding the chronic character of the condition, treatment duration, nutrition, and visual aids and low vision rehabilitation. Many patients were not actively involved during the decision-making process. Altogether, patients with AMD are faced with challenges in terms of patient-HCP communication. Methods of providing information and discussing possible options for care need to be further investigated and improved for this patient group.

Original language	English
Pages (from-to)	646-660
Journal	Survey of ophthalmology
Volume	69
Issue number	4
DOIs	https://doi.org/10.1016/j.survophthal.2024.03.002
Publication status	Published - 1 Jul 2024
Externally published	Yes

Funding

The authors would like to thank Linda Schoonmade, medical information specialist at Amsterdam University Medical Centers, location VU Medical Center, for her assistance with the literature search. We also thank Mara van Weele, researcher at the Netherlands Institute for Health Services Research, for her help with the screening process. This research was supported by The Netherlands Organisation for Health Research and Development (ZonMw, grant number 9431.4001). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. RN was chair of Vision 2020 in The Netherlands. The institution of RN receives a fee for advisory work from Janssen, Cilag N.V. We performed a search in the PubMed, Embase, PsycINFO, CINAHL and Web of Science database. The search syntaxes were developed in consultation with a medical information specialist. The main search terms included Eye diseases, Patient experiences, Communication, Information provision and Decision making. Full search string can be found in Appendix I. We included studies if they: (1) focused on adult participants diagnosed with dry and/or wet AMD; (2) addressed information provision, communication and/or shared decision-making; (3) reported from the perspective of the patient; (4) were written in English; and (5) were published from 2005 onwards. The literature search was performed on March 25, 2022. This research was supported by The Netherlands Organisation for Health Research and Development (ZonMw, grant number 9431.4001). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. RN was chair of Vision 2020 in The Netherlands. The institution of RN receives a fee for advisory work from Janssen, Cilag N.V.

Funders	Funder number
Linda Schoonmade
Janssen Pharmaceutica
ZonMw	9431.4001
ZonMw

Access to Document

10.1016/j.survophthal.2024.03.002

Persistent URL (handle)

Persistent link

Cite this

@article{564ba5311979415daa9b7be5891ce423,

title = "Understanding healthcare communication in age-related macular degeneration care: A mixed-methods review of patients{\textquoteright} perspectives",

abstract = "Age-related macular degeneration (AMD) is the most common cause of irreversible visual impairment among people aged 50 years and older. Earlier research has indicated that the communication process between patients and healthcare professionals (HCPs) leaves considerable room for improvement in AMD care. Effective communication is essential to enhance trust in the professional and understanding of the diagnosis and treatment, and decrease anxiety and stress related to illness. We review patients{\textquoteright} experiences, needs and preferences regarding information provision, communication style of the HCP and shared decision-making. We conducted a systematic search in PubMed, Embase, PsycINFO, CINAHL and Web of Science. Study quality was assessed using standard checklists of quality measures. Our search returned 31 eligible articles. Findings indicated current deficits in information provision for people with AMD. Patients were often ill-informed regarding the chronic character of the condition, treatment duration, nutrition, and visual aids and low vision rehabilitation. Many patients were not actively involved during the decision-making process. Altogether, patients with AMD are faced with challenges in terms of patient-HCP communication. Methods of providing information and discussing possible options for care need to be further investigated and improved for this patient group.",

author = "Mariska Scheffer and Juliane Menting and Hennie Boeije and {van Nispen}, Ruth and {van Dulmen}, Sandra",

year = "2024",

month = jul,

day = "1",

doi = "10.1016/j.survophthal.2024.03.002",

language = "English",

volume = "69",

pages = "646--660",

journal = "Survey of ophthalmology",

issn = "0039-6257",

publisher = "Elsevier USA",

number = "4",

}

TY - JOUR

T1 - Understanding healthcare communication in age-related macular degeneration care

T2 - A mixed-methods review of patients’ perspectives

AU - Scheffer, Mariska

AU - Menting, Juliane

AU - Boeije, Hennie

AU - van Nispen, Ruth

AU - van Dulmen, Sandra

PY - 2024/7/1

Y1 - 2024/7/1

N2 - Age-related macular degeneration (AMD) is the most common cause of irreversible visual impairment among people aged 50 years and older. Earlier research has indicated that the communication process between patients and healthcare professionals (HCPs) leaves considerable room for improvement in AMD care. Effective communication is essential to enhance trust in the professional and understanding of the diagnosis and treatment, and decrease anxiety and stress related to illness. We review patients’ experiences, needs and preferences regarding information provision, communication style of the HCP and shared decision-making. We conducted a systematic search in PubMed, Embase, PsycINFO, CINAHL and Web of Science. Study quality was assessed using standard checklists of quality measures. Our search returned 31 eligible articles. Findings indicated current deficits in information provision for people with AMD. Patients were often ill-informed regarding the chronic character of the condition, treatment duration, nutrition, and visual aids and low vision rehabilitation. Many patients were not actively involved during the decision-making process. Altogether, patients with AMD are faced with challenges in terms of patient-HCP communication. Methods of providing information and discussing possible options for care need to be further investigated and improved for this patient group.

AB - Age-related macular degeneration (AMD) is the most common cause of irreversible visual impairment among people aged 50 years and older. Earlier research has indicated that the communication process between patients and healthcare professionals (HCPs) leaves considerable room for improvement in AMD care. Effective communication is essential to enhance trust in the professional and understanding of the diagnosis and treatment, and decrease anxiety and stress related to illness. We review patients’ experiences, needs and preferences regarding information provision, communication style of the HCP and shared decision-making. We conducted a systematic search in PubMed, Embase, PsycINFO, CINAHL and Web of Science. Study quality was assessed using standard checklists of quality measures. Our search returned 31 eligible articles. Findings indicated current deficits in information provision for people with AMD. Patients were often ill-informed regarding the chronic character of the condition, treatment duration, nutrition, and visual aids and low vision rehabilitation. Many patients were not actively involved during the decision-making process. Altogether, patients with AMD are faced with challenges in terms of patient-HCP communication. Methods of providing information and discussing possible options for care need to be further investigated and improved for this patient group.

UR - http://www.scopus.com/inward/record.url?scp=85189946116&partnerID=8YFLogxK

U2 - 10.1016/j.survophthal.2024.03.002

DO - 10.1016/j.survophthal.2024.03.002

M3 - Review article

SN - 0039-6257

VL - 69

SP - 646

EP - 660

JO - Survey of ophthalmology

JF - Survey of ophthalmology

IS - 4

ER -

Understanding healthcare communication in age-related macular degeneration care: A mixed-methods review of patients’ perspectives

Abstract

Funding

Access to Document

Persistent URL (handle)

Other files and links

Fingerprint

Cite this