Weight management communications in idiopathic intracranial hypertension: challenges and recommendations from the patients’ perspective.

Sally Abbott; Amanda Denton; Sui H Wong; Susan P Mollan; Kim Bul

doi:10.1136/bmjno-2023-000527

Weight management communications in idiopathic intracranial hypertension: challenges and recommendations from the patients’ perspective.

Sally Abbott
, Amanda Denton
, Sui H Wong
, Susan P Mollan
, Kim Bul

IIH UK
University Hospitals Coventry and Warwickshire NHS Trust
Moorfields Eye Hospital NHS Foundation Trust
Guy’s and St Thomas’ NHS Foundation Trust
King's College London
University College London
University Hospitals Birmingham NHS Foundation Trust
University of Birmingham

Research output: Contribution to journal › Article › peer-review

11 Citations (Scopus)

103 Downloads (Pure)

Abstract

Background: Idiopathic Intracranial Hypertension (IIH) is a neurometabolic condition severely impacting the quality of life of people living with IIH (PwIIH). Most PwIIH are overweight or live with obesity, and weight loss is recommended by healthcare professionals (HCPs) as it is central to disease management. There is currently no research evaluating patient-clinician interactions when discussing weight management in IIH. The aim of this study was to evaluate the patient experience of communication with HCPs regarding weight management from the perspective of PwIIH.
Methods: A cross-sectional online survey was developed and distributed by the IIH UK charity via their mailing list and social media network. Eligible participants were adults with IIH who have been recommended to lose weight by their HCP. Descriptive statistics were used to summarize quantitative responses and content analysis was used to inductively draw out themes from open-ended free-text responses.
Results: There were 625 respondents. One fifth of PwIIH (n=127/603, 21%) felt that HCPs were supportive and empathetic about weight management. Five themes were identified on how experiences regarding weight management for IIH can be improved, with PwIIH recommending for HCPs to: (1) detail the relationship between IIH and weight, (2) individualise care, (3) give advice, (4) provide support, and (5) adapt communication.
Conclusion: The majority of PwIIH recalled a poor experience and negative emotions when engaged in discussions regarding weight management with their HCPs. Further research should explore the HCPs perspective and evaluate interventions aiming to improve the quality of patient-HCPs communication in IIH.

Original language	English
Article number	e000527
Number of pages	7
Journal	BMJ Neurology Open
Volume	5
Issue number	2
Early online date	9 Dec 2023
DOIs	https://doi.org/10.1136/bmjno-2023-000527
Publication status	Published - 9 Dec 2023

Bibliographical note

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

Funder

This study was funded by the IIH UK charity (grant/award number N/A).

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

SDG 3 Good Health and Well-being

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10.1136/bmjno-2023-000527Licence: CC BY-NC

PublishedFinal published version, 971 KBLicence: CC BY-NC

Cite this

@article{f5db0c98645344bf8374344f9d92c99b,

title = "Weight management communications in idiopathic intracranial hypertension: challenges and recommendations from the patients{\textquoteright} perspective.",

abstract = "Background: Idiopathic Intracranial Hypertension (IIH) is a neurometabolic condition severely impacting the quality of life of people living with IIH (PwIIH). Most PwIIH are overweight or live with obesity, and weight loss is recommended by healthcare professionals (HCPs) as it is central to disease management. There is currently no research evaluating patient-clinician interactions when discussing weight management in IIH. The aim of this study was to evaluate the patient experience of communication with HCPs regarding weight management from the perspective of PwIIH. Methods: A cross-sectional online survey was developed and distributed by the IIH UK charity via their mailing list and social media network. Eligible participants were adults with IIH who have been recommended to lose weight by their HCP. Descriptive statistics were used to summarize quantitative responses and content analysis was used to inductively draw out themes from open-ended free-text responses. Results: There were 625 respondents. One fifth of PwIIH (n=127/603, 21\%) felt that HCPs were supportive and empathetic about weight management. Five themes were identified on how experiences regarding weight management for IIH can be improved, with PwIIH recommending for HCPs to: (1) detail the relationship between IIH and weight, (2) individualise care, (3) give advice, (4) provide support, and (5) adapt communication. Conclusion: The majority of PwIIH recalled a poor experience and negative emotions when engaged in discussions regarding weight management with their HCPs. Further research should explore the HCPs perspective and evaluate interventions aiming to improve the quality of patient-HCPs communication in IIH. ",

author = "Sally Abbott and Amanda Denton and Wong, \{Sui H\} and Mollan, \{Susan P\} and Kim Bul",

note = "This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/",

year = "2023",

month = dec,

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doi = "10.1136/bmjno-2023-000527",

language = "English",

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issn = "2632-6140",

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TY - JOUR

T1 - Weight management communications in idiopathic intracranial hypertension

T2 - challenges and recommendations from the patients’ perspective.

AU - Abbott, Sally

AU - Denton, Amanda

AU - Wong, Sui H

AU - Mollan, Susan P

AU - Bul, Kim

N1 - This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

PY - 2023/12/9

Y1 - 2023/12/9

N2 - Background: Idiopathic Intracranial Hypertension (IIH) is a neurometabolic condition severely impacting the quality of life of people living with IIH (PwIIH). Most PwIIH are overweight or live with obesity, and weight loss is recommended by healthcare professionals (HCPs) as it is central to disease management. There is currently no research evaluating patient-clinician interactions when discussing weight management in IIH. The aim of this study was to evaluate the patient experience of communication with HCPs regarding weight management from the perspective of PwIIH. Methods: A cross-sectional online survey was developed and distributed by the IIH UK charity via their mailing list and social media network. Eligible participants were adults with IIH who have been recommended to lose weight by their HCP. Descriptive statistics were used to summarize quantitative responses and content analysis was used to inductively draw out themes from open-ended free-text responses. Results: There were 625 respondents. One fifth of PwIIH (n=127/603, 21%) felt that HCPs were supportive and empathetic about weight management. Five themes were identified on how experiences regarding weight management for IIH can be improved, with PwIIH recommending for HCPs to: (1) detail the relationship between IIH and weight, (2) individualise care, (3) give advice, (4) provide support, and (5) adapt communication. Conclusion: The majority of PwIIH recalled a poor experience and negative emotions when engaged in discussions regarding weight management with their HCPs. Further research should explore the HCPs perspective and evaluate interventions aiming to improve the quality of patient-HCPs communication in IIH.

AB - Background: Idiopathic Intracranial Hypertension (IIH) is a neurometabolic condition severely impacting the quality of life of people living with IIH (PwIIH). Most PwIIH are overweight or live with obesity, and weight loss is recommended by healthcare professionals (HCPs) as it is central to disease management. There is currently no research evaluating patient-clinician interactions when discussing weight management in IIH. The aim of this study was to evaluate the patient experience of communication with HCPs regarding weight management from the perspective of PwIIH. Methods: A cross-sectional online survey was developed and distributed by the IIH UK charity via their mailing list and social media network. Eligible participants were adults with IIH who have been recommended to lose weight by their HCP. Descriptive statistics were used to summarize quantitative responses and content analysis was used to inductively draw out themes from open-ended free-text responses. Results: There were 625 respondents. One fifth of PwIIH (n=127/603, 21%) felt that HCPs were supportive and empathetic about weight management. Five themes were identified on how experiences regarding weight management for IIH can be improved, with PwIIH recommending for HCPs to: (1) detail the relationship between IIH and weight, (2) individualise care, (3) give advice, (4) provide support, and (5) adapt communication. Conclusion: The majority of PwIIH recalled a poor experience and negative emotions when engaged in discussions regarding weight management with their HCPs. Further research should explore the HCPs perspective and evaluate interventions aiming to improve the quality of patient-HCPs communication in IIH.

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DO - 10.1136/bmjno-2023-000527

M3 - Article

SN - 2632-6140

VL - 5

JO - BMJ Neurology Open

JF - BMJ Neurology Open

IS - 2

M1 - e000527

ER -

Weight management communications in idiopathic intracranial hypertension: challenges and recommendations from the patients’ perspective.

Abstract

Bibliographical note

Funder

UN SDGs

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