P101 A study exploring the nutritional attitudes and dietary behaviours of adults aged 18 or over who are resident in the UK and have a haemochromatosis diagnosis

<h3>Introduction</h3> This quantitative research study formed part of an MSc in Nutritional Therapy, dated January 2024. It surveyed the nutritional attitudes and dietary behaviours of UK adults diagnosed with haemochromatosis and the need for dietary advice provided by healthcare professionals (HCPs). It also compared symptoms commonly associated with haemochromatosis at the point of diagnosis with symptoms after the commencement of venesection treatment. <h3>Methods</h3> An online anonymous questionnaire was distributed via a closed Facebook support group ‘Haemochromatosis Family’. The survey response data was analysed using SPSS v29 to produce descriptive and inferential statistics. <h3>Results</h3> The survey attracted 256 eligible participants and the main research findings are detailed below: Differences in nutritional attitudes and dietary behaviours A Mann-Whitney test of the two most common variants (C282Y/C282Y and C282Y/H63D) showed no significant differences across any of the attitude and behaviour scales. However, differences were found in statement responses according to stage of treatment, examples of which are given in figure 1. Statistically significant differences were found in nutritional attitudes for female participants in the iron specific scale between the stages of treatment, χ 2 (2, n = 209) = 14.161, p = &lt;.001, indicating a lower level of agreement to the iron related questions among females in maintenance than those females in active treatment. Symptoms associated with haemochromatosis The results aligned with other studies that cited joint pain and fatigue as the two most frequently recorded symptoms on diagnosis. While the risk of serious consequences of iron loading is much less when venesection treatment is started at a pre-symptomatic stage, this survey found that only 17 participants (9.8%) were asymptomatic at the time of diagnosis. While 120 participants (46.9%) had no new symptoms after the start of venesection, 18 participants (7.0%) experienced new symptoms of joint pain, and 11 participants recorded a loss of body hair as a new symptom (4.3%). Dietary advice While over half of the participants had made dietary changes since diagnosis (n = 142, 55.5%) a large proportion of people stated they would have liked more dietary advice (n = 156, 52.4%). In addition, 109 people (42.6%) said they had felt unable to raise dietary questions or concerns with HCPs. <h3>Conclusion</h3> This research identified that obtaining an early diagnosis and dietary support from HCPs is important to patients and HCPs should be mindful that nutritional attitudes and dietary behaviour may change according to biological sex and stage of treatment.

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Published
2025-10-01
DOI
https://doi.org/10.1136/gutjnl-2025-basl.116
Primary Topic
Child Nutrition and Water Access
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article

P101 A study exploring the nutritional attitudes and dietary behaviours of adults aged 18 or over who are resident in the UK and have a haemochromatosis diagnosis

Miranda Harris, William R. Lindsay
Child Nutrition and Water Access
article

P101 A study exploring the nutritional attitudes and dietary behaviours of adults aged 18 or over who are resident in the UK and have a haemochromatosis diagnosis

Miranda Harris, William R. Lindsay
article en

Abstract

<h3>Introduction</h3> This quantitative research study formed part of an MSc in Nutritional Therapy, dated January 2024. It surveyed the nutritional attitudes and dietary behaviours of UK adults diagnosed with haemochromatosis and the need for dietary advice provided by healthcare professionals (HCPs). It also compared symptoms commonly associated with haemochromatosis at the point of diagnosis with symptoms after the commencement of venesection treatment. <h3>Methods</h3> An online anonymous questionnaire was distributed via a closed Facebook support group ‘Haemochromatosis Family’. The survey response data was analysed using SPSS v29 to produce descriptive and inferential statistics. <h3>Results</h3> The survey attracted 256 eligible participants and the main research findings are detailed below: Differences in nutritional attitudes and dietary behaviours A Mann-Whitney test of the two most common variants (C282Y/C282Y and C282Y/H63D) showed no significant differences across any of the attitude and behaviour scales. However, differences were found in statement responses according to stage of treatment, examples of which are given in figure 1. Statistically significant differences were found in nutritional attitudes for female participants in the iron specific scale between the stages of treatment, χ 2 (2, n = 209) = 14.161, p = &lt;.001, indicating a lower level of agreement to the iron related questions among females in maintenance than those females in active treatment. Symptoms associated with haemochromatosis The results aligned with other studies that cited joint pain and fatigue as the two most frequently recorded symptoms on diagnosis. While the risk of serious consequences of iron loading is much less when venesection treatment is started at a pre-symptomatic stage, this survey found that only 17 participants (9.8%) were asymptomatic at the time of diagnosis. While 120 participants (46.9%) had no new symptoms after the start of venesection, 18 participants (7.0%) experienced new symptoms of joint pain, and 11 participants recorded a loss of body hair as a new symptom (4.3%). Dietary advice While over half of the participants had made dietary changes since diagnosis (n = 142, 55.5%) a large proportion of people stated they would have liked more dietary advice (n = 156, 52.4%). In addition, 109 people (42.6%) said they had felt unable to raise dietary questions or concerns with HCPs. <h3>Conclusion</h3> This research identified that obtaining an early diagnosis and dietary support from HCPs is important to patients and HCPs should be mindful that nutritional attitudes and dietary behaviour may change according to biological sex and stage of treatment.

University of Worcester (GB)
Openalex Percentile: Top 66%
Child Nutrition and Water Access
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