Anxiety and depression is common in individuals living with a rare disease: exploring the impact of pain and physical activity in UK Biobank data

doi:10.21203/rs.3.rs-4616507/v1

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Research Article

Anxiety and depression is common in individuals living with a rare disease: exploring the impact of pain and physical activity in UK Biobank data

https://doi.org/10.21203/rs.3.rs-4616507/v1

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Background

Whilst individually rare, affecting less than 1 in 2,000 people, together rare diseases (RDs) affect an estimated 475 million people globally, including 4 million people within the UK. RDs are often associated with unmet care needs, which can impact both physical and mental health.

Harnessing the UK Biobank, health and wellbeing data from 502,401 individuals over the age of 40 was assessed. Using the Orphanet database for rare diseases and International Classification of Diseases Codes 10 (ICD10) from the UK Biobank, participants were classified as having no diagnosis, non-rare diagnoses only, or a rare diagnosis with or without comorbidities.

Results

Mental health, pain, physical wellbeing, and comorbidity measures were compared between these three groups. Depression and anxiety was significantly more common in those living with a rare disease (67% and 65%, respectively) compared to non-rare diagnoses (NRD) (p < 4x10^-7). Depression and anxiety was more common in females compared to males across all groups (p < 0.009). Individuals living with a RD experienced significantly more general pain (p < 3x10^-28), and reported significantly reduced physical activity (p < 3x10^-44), compared to NRD. A higher proportion of individuals living with a RD also presented a higher comorbidity burden, when compared to individuals living with NRD (NRD: Median number of comorbidities = 5, IQR = 3-10, RD: Median number of comorbidities = 17, IQR = 10-29).

Conclusion

This study reveals a significant burden of disease diagnosis, which is further exacerbated by a rare disease diagnosis. This work highlights the need for novel support mechanisms to target the specific needs of patients living with a RD, with careful consideration of gender-specific influences.

Rare disease

mental health

disease burden

gender-differences

Whilst individually rare, affecting less than 1 in 2,000 people (as classified by the European Commission) (1), together rare diseases (RDs) affect an estimated 475 million people globally (2), with 4 million affected in the UK, based on a prevalence of ¹/₁₇ for a population of 68 million (3). There are over 10,500 different types of RDs identified (4). RDs have a large economic, social and quality of life costs; costing approximately $997 billion in the USA in 2019 (5). A RD diagnosis can take over 5 years, true for 35% of Rare Experience 2020 participants, with approximately 10% waiting over 20 years (6). This time period, referred to as the ‘diagnostic odyssey,’ costs the UK health service approximately £13,000 per patient (7). Moreover, RDs are often associated with unmet care needs, with family support an essential component of RD care (8).

One particular area of unmet need is mental health. Indeed, the England, Wales, Scotland and Northern Ireland Rare Disease Action Plans outlined this as a future focus, highlighting the requirement to improve the integration of mental health support into RD care (9–12). A 2022 study of 1,231 RD patients and 564 carers from the UK, highlighted the negative impact of RD on mental health (13). In 2021, the first systematic review of affective and anxiety disorders in RD was carried out, in 5,951 patients with 24 different RDs, highlighting a high prevalence of 44.1% for lifetime anxiety (14). This work reflects outcomes from reports investigating the lived experience and mental health of those with a RD diagnosis in the UK (6, 15). Whilst research into the quality of life and mental health of those living with a RD has been increasing, particularly over recent years (13, 16–23), scope exists to expand this research within the UK.

This study explored the mental health, as well as pain and physical impediments, experienced by those living with a RD in the UK, harnessing the UK Biobank (24). This resource also provided the opportunity to compare factors between those living with a RD, those diagnosed with a non-rare disease (NRD) and those with no diagnoses (ND) reported. Gender differences in these factors were also explored, to contribute towards overcoming the ‘data gap’ and gender bias observed in health research (25), which is particularly relevant in RD (26).

Participants

This study harnessed data from the UK Biobank. The UK Biobank is a large-scale database of approximately 500,000 participants from the UK, recruited at age 40 to 69. Mean age at recruitment was 56.6, with 94% of participants of white ethnicity. The UK Biobank host genetic and health information, followed up over time (24, 27). This publication is associated with the UK Biobank project ID 63533. Data was downloaded on 30th September 2022.

Classification of participants

The Orphanet database (28) was downloaded from https://www.orphadata.com/alignments/ (Json file June 2022 version). Those Rare Disease ICD10 (International Classification of Diseases) codes which were ‘Non-rare in Europe’ were removed from the database. Using UK Biobank ICD10 codes, from UK Biobank data field 41270, participants were classified as no diagnosis (no ICD10 code listed), non-rare disease (no ICD10 code match in the Orphanet database) or rare disease (ICD10 code match in the Orphanet database). This analysis was done using R studio (2022.07.2 + 576, R version 4.1.1.), with the following packages readr (v. 2.0.2), tidyr (v. 1.1.4.), dplyr (v. 1.0.7), tidyverse (v. 1.3.1), rjson (v. 0.2.21) and data.table (v. 1.14.2).

Statistics

A two-sample proportion test was carried out to compare the data between two groups (e.g. prop.test (c(3137,2834), c(6252,4393), alternative = "two.sided", conf.level = 0.95, correct = TRUE)). A significance cut off p < 0.05 was used. Effect sizes were generated using the ES.h function from the pwr package (v. 1.3-0).

UK Biobank Parameters

The following UK Biobank parameters were assessed:

In general how happy are you? (Data filed 20458).
In general how happy are you with your health? (Data filed 20459).
Did you ever tell a professional about these (worry / anxiety) problems (medical doctor, psychologist, social worker, counsellor, nurse, clergy, or other helping professional)? (Data filed 20428).
Did you ever tell a professional about these (depression) problems (medical doctor, psychologist, social worker, counsellor, nurse, clergy, or other helping professional)? (Data filed 20448).
Have you had pains all over the body for more than 3 months? (Data filed 2956).
In the last month have you experienced any of the following that interfered with your usual activities? (Data filed 6159, instances 0.0 to 0.6).
In the last 4 weeks did you spend any time doing the following? (Data filed 6164, instances 0.0 to 0.4).
Sex (Data field 31 − 0.0) - Acquired from the central NHS registry at recruitment, or may have been updated by the participant to become self-reported gender.

All 502,401 UK Biobank participants for which data was available were classified into no diagnosis (ND), non-rare disease (NRD) diagnosis or rare disease (RD) diagnosis groups (Table 1) based on ICD diagnosis codes, aligning with the Orphanet database (excluding those ICD codes which were non-rare in Europe). Individuals with any rare diagnosis code made up 42.2% of participants, those with only non-rare diagnoses codes made up a higher 45.4%, and individuals without any diagnosis code made up 12.4% of participants.

Table 1

Classification of UK participants as no diagnosis (ND), non-rare diagnosis (NRD) or rare diagnosis (RD).
Grouping	Number	Percentage (%)
No diagnosis (ND)	62,394	12.4
Non-rare diagnosis (NRD)	228,129	45.4
Rare diagnosis (RD)	211,878	42.2
Total	502,401

Assessing general happiness across groups highlighted a stepwise pattern from ND, to NRD, to RD (Fig. 1). For example, 0.66% of individuals with ND reported that they were very unhappy, significantly increasing to 0.83% in NRD individuals (p = 0.017, effect size = 0.02), and further significantly increasing to 1.03% in the RD group (p = 1.52x10^− 4, effect size = 0.02) (Table S1, Table S2). A larger difference was observed when specifically assessing general happiness with own health (Fig. 2, Table S3 and Table S4). 5.1% of participants with ND reported being unhappy (moderately, very or extremely), this rose to 10.1% in NRD and 19.5% in RD. Stratifying by gender, more females reported being unhappy (moderately, very or extremely) compared to males (Figures S1 and S2, Table S5); however, this was only significantly different in the RD group (p = 2.39x10^− 12, effect size = 0.059).

When assessing the proportion of individuals who had informed a professional about anxiety or depression, once again a stepwise increase was observed from ND, NRD to RD (Table S6 and S7). Stratifying by gender, a significantly higher proportion of individuals with RD reported anxiety compared to ND (Fig. 3, p: Female = 3.25x10^− 63, Male = 1.6x10^− 35; effect size: Female = 0.31, Male = 0.30), and compared to NRD (p: Female = 1.68x10^− 25, Male = 3.31x10^− 7; effect size: Female = 0.13, Male = 0.08). A significantly higher proportion of females compared to males presented with anxiety across all groups (p: ND = 9.64x10^− 8, NRD = 3.11x10^− 15, RD = 6.04x10^− 24; effect size: ND = 0.14, NRD = 0.11, RD = 0.15) (Table S8).

Stratifying by gender, a significantly higher proportion of individuals with RD reported depression compared to ND (Fig. 4, p: Female = 4.95x10^− 80, Male = 1.62x10^− 41; effect size: Female = 0.25, Male = 0.23), and compared to NRD (p: Female = 4.06x10^− 15, Male = 6.8x10^− 11; effect size: Female = 0.07, Male = 0.08). A significantly higher proportion of females compared to males presented with depression across all groups (p: ND = 5.36x10^− 35, NRD = 1.34x10^− 148, RD = 3.42x10^− 114; effect size: ND = 0.23, NRD = 0.26, RD = 0.25) (Table S9).

Alongside measures of mental health, this study explored the impact of RD on pain. The proportion of individuals experiencing general pain all over the body for more than 3 months were compared between ND, NRD and RD groups (Fig. 5). A significantly higher proportion of individuals with RD reported general pain for more than 3 months, compared to ND (p = 2.1x10^− 66, effect size = 0.74) or NRD (p = 3x10^− 28, effect size = 0.25) (Table S10). Similar patterns were identified for males and females; however, a significantly higher proportion of females compared to males reported general pain for more than 3 months across all diagnosis groups (Table S11) (p: ND = 4.9x10^− 8, NRD = 0.0088, RD = 1.385x10^− 5; effect size: ND = 0.22, NRD = 0.27, RD = 0.12).

To explore the differences in the types of pain experienced by those individuals living with ND, NRD and RD, and determine how this hinders their activities, the proportion of individuals within these groups experiencing headaches, facial pain, neck or shoulder pain, back pain, stomach or abdominal pain, hip pain, knee pain or all over pain was assessed (Fig. 6, Table S12). Across all pain types, a significantly higher proportion of individuals with RD reported experiencing pain, compared to both ND and NRD (p < 0.003) (Table S13). A stepwise increase was observed from ND, to NRD, to RD across all pain types, except headache where NRD had the highest percentage (Headache: ND = 18.1%, NRD = 21.1%, RD = 20.6%).

To determine if individuals living with a RD were adversely impacted with respect to physical activity, types of physical activity carried out by participants in the past four weeks were compared between ND, NRD and RD groups. A significant decrease in all types of activity assessed was observed in the RD group (Fig. 7, Table S14 and Table S15). The largest difference was observed for ‘other exercises’, such as swimming, cycling, keeping fit and bowling.

Overall, this research has shown a higher burden for those living with a rare disease, with respect to mental health, pain and physical impairment. To further explore this, a comparison of the comorbidity burden between RD and NRD was made. The histogram shown in Fig. 8 highlights that a higher proportion of individuals living with a RD presented additional diagnoses, when compared to individuals living with NRD (NRD: Median = 5, IQR = 3–10, RD: Median = 17, IQR = 10–29). Similar distributions were observed for males and females (Table S16).

Evaluating the UK Biobank data, a broad range of RDs were explored in a UK population. Whilst the UK Biobank has previously been linked to the Orphanet knowledge base (29), the present study is the first to our knowledge, to compare mental health, as well as physical wellbeing, between those individuals living with a rare disease, those diagnosed with a common disease, and those with no disease diagnosis.

This study has shown that a RD diagnosis had a significant impact on mental health, reflecting results of RD condition-specific studies (14). Individuals living with a RD experienced significantly more pain, which can be a contributing factor to poorer mental health, with a bi-directional relationship previously shown for chronic pain (30). A significant reduction in physical activity was observed in those living with a RD, which may reflect the increased chronic pain reported by these individuals. Moreover, reduced physical activity has the potential to further reduce mental well-being, and reduce social interaction opportunities (31–33).

The negative impact of RD on mental health was also shown in a 2022 study of 1,231 RD patients and 564 carers from the UK (13). This study reported that 90–95% of respondents had experienced depression or anxiety (13). Interestingly, whilst 62% of respondents felt they were satisfied with their physical care, only 39% were satisfied with their mental health care (13). As reflected in the present study of 211,878 individuals with RD, 87% of respondents felt their physical wellbeing was impacted, in this instance, particularly by their mental health (13). Key factors which negatively impacted the mental health of respondents included a lack of awareness of their condition amid healthcare providers and the public, as well as accessing healthcare services or treatments (13).

The present study advances insights by exploring gender specific factors. The negative impact of RD on mental health and pain was more prominent in females, which may be due to influences from menopause and hormone sensitivities (34), particularly relevant for the UK Biobank participants, with the average age of recruitment being 56.6. Gender differences were highlighted in 6 of the 39 studies included in the 2021 meta-analysis by Uhlenbusch et al., in which associations were observed between females and anxiety or depression (14). A gender-bias in RD care has been reported, which could contribute to increased anxiety and depression in females living with a RD. For example, a 2016 French RD report highlighted that whilst 75% of males were referred to hospital less than three years after the first symptoms, it took more than five years for 75% of females to referred to a hospital (35). This report suggested that a lack of consideration of initial symptoms in female patients resulted in later referral, later disease naming and later management compared to males (35). It is important to note; however, due to male mental health stigma, male anxiety and depression may also be underreported (36). Reports have also shown that males were more likely to perceive their health as good (37).

Results from this research showed that for individuals with no diagnosis, or those with a common disease diagnosis, there was no significant difference in the proportion of males versus females reporting that they were unhappy (moderately, very or extreme) with their own health. In individuals with a RD, however, significantly more females compared to males reported that they were unhappy with their own health. This provides additional evidence to support that females living with a rare disease may face additional burdens, which warrants additional investigation and support.

It has been reported that those living with a RD, as well as those living with more common diseases, face difficulties with health-related quality of life; however, as highlighted in a 2022 review, intangible costs of RD are less well studied than economic or medical costs (23). Interestingly, Mausbach et al. demonstrated that these factors are not unrelated, as cancer patients with anxiety and depression were more likely to require emergency department and hospital visits (38). Annual healthcare costs (in US dollars) were 2.6 times higher in patients experiencing anxiety and depression, compared to those who did not (38). Whilst this research relates to cancer, scope exists to study these associations in RD. Reducing the ‘diagnostic odyssey’ in RD improves quality of life (18), whilst also reducing the substantial economic costs of these diagnostic processes (7). Therefore, there is mutual benefit for both healthcare providers and patients to see improved disease diagnosis and management.

A particular strength of the present study was the ability to compare between ND, NRD and RD groups. Whilst an increase in burden was observed for individuals with a common disease compared to individuals without a diagnosis, in all factors measured (except for headaches), RD presented an even more significant burden. The substantial burden felt by those individuals living with a RD may be a consequence of healthcare provisions and social supports which are not fit for purpose, warranting future investigation and investment. This highlights the timeliness of regional action plans within the UK and Ireland to overcome such limitations (9–12, 39).

There is great value in assessing population studies such as the UK Biobank; however, this research lacks disease-specific measurements and condition-specific feedback which can provide more specific insights into RD (23). As only 8% of RDs have a specific ICD-10 code, it is not possible to explore this granular detail in UK Biobank presently (40). The nature of RD means that sample sizes for individual diseases are often too small to see significant effects. The large sample size available via the UK Biobank allowed for clear and significant stepwise patterns from ND, to NRD, to RD groups to be observed in this study.

This study highlights the need for new support mechanisms that target the specific needs of patients living with a RD. Overall this work has shown those living with a RD have increased pain, decreased happiness, increased anxiety and depression, a higher comorbidity burden, as well as reduced physical activity. This work also uncovered gender-specific differences observed in how strongly RD impacts these factors, with females living with a RD presenting with an increase disease burden.

IQR - Interquartile range

ICD10 - International Classification of Diseases Codes 10

ND - No diagnosis

NRD - Non-rare disease diagnosis

PNTA = Prefer not to answer

RD - Rare disease diagnosis

Ethics approval and consent to participate

UK Biobank hold ethics approval and consent to participate (North West - Haydock Research Ethics Committee, 21/NW/0157). This project was approved by the UK Biobank (project ID 63533).

Consent for publication

Not applicable.

Availability of data and materials

The datasets analysed during the current study are available in the UK Biobank (https://www.ukbiobank.ac.uk/). Data is available upon request to the UK Biobank.

Competing interests

Authors declare no conflict of interest.

Funding

This research was supported by the HSC R&D division (STL/5569/19) and UKRI (MRC MC_PC_20026; MRC MR/X503162/1). AEC received a PhD studentship from the NI Department from the Economy. CH was supported by funding from Science Foundation Ireland and the Department for the Economy partnership award (15/IA/3152).

Authors' contributions

Contributor Role	Role Definition
Conceptualization	CH, AJM
Data Curation	CH
Formal Analysis	All authors
Funding Acquisition	AJM
Investigation	CH, SS
Methodology	CH, AC, AJM
Project Administration	AJM
Resources	AJM
Supervision	AJM, CH
Validation	All authors
Visualization	CH
Writing – Original Draft Preparation	CH
Writing – Review & Editing & approval of final version	All authors

Acknowledgements

This research was possible due to access to UK Biobank data, under approved project 63533.

European Commission. EU research on rare diseases [Internet]. 2024. https://research-and-innovation.ec.europa.eu/research-area/health/rare-diseases_en.
World Economic Forum. Global Data Access for Solving Rare Disease: A Health Economics Value Framework [Internet]. 2020. https://www.weforum.org/publications/global-access-for-solving-rare-disease-a-health-economics-value-framework/.
Rare Disease Research Landscape Steering Group. Rare Diseases Research Landscape Project Report. 2023.
Lamoreaux K, Lefebvre S, Levine DS, Erler W, Hume T. Rare-X: The Power of Being Counted. 2022.
Yang G, Cintina I, Pariser A, Oehrlein E, Sullivan J, Kennedy A. The national economic burden of rare disease in the United States in 2019. Orphanet J Rare Dis [Internet]. 2022;17(1):1–11. https://doi.org/10.1186/s13023-022-02299-5.
Genetic Alliance UK. Rare Experience 2020. The lived experiences of people affected by genetic, rare and undiagnosed conditions. 2020.
Mendelian. A preliminary assessment of the potential impact of rare diseases on the NHS. 2018.
López-Bastida J, Oliva-Moreno J, Linertová R, Serrano-Aguilar P. Social/economic costs and health-related quality of life in patients with rare diseases in Europe. Eur J Heal Econ. 2016;17:1–5.
UK Department of Health and Social Care. England Rare Diseases Action Plan 2024. 2024.
Department of Health NI. Northern Ireland Rare Diseases Action Plan 2022/23 [Internet]. 2022. https://www.health-ni.gov.uk/sites/default/files/publications/health/doh-ni-rare-diseases-action-plan-2223.pdf.
NHS Wales Executive. Wales Rare Diseases Action Plan 2022–2026 [Internet]. 2022. https://executive.nhs.wales/functions/networks-and-planning/rare-diseases/action-plan-2022-2026/.
Scottish Government. Rare disease action plan [Internet]. 2022. https://www.gov.scot/publications/rare-disease-action-plan/.
Spencer-Tansley R, Meade N, Ali F, Simpson A, Hunter A. Mental health care for rare disease in the UK – recommendations from a quantitative survey and multi-stakeholder workshop. BMC Health Serv Res [Internet]. 2022;22(1):1–14. https://doi.org/10.1186/s12913-022-08060-9.
Uhlenbusch N, Swaydan J, Höller A, Löwe B, Depping MK. Affective and anxiety disorders in patients with different rare chronic diseases: A systematic review and meta-analysis. Psychol Med. 2021;51(16):2731–41.
Shire. Rare disease impact report: insights from patients and the medical community [Internet]. Shire Human Genetic Therapies. 2013. https://globalgenes.org/wp-content/uploads/2013/04/ShireReport-1.pdf.
Anderson M, Elliott EJ, Zurynski YA. Australian families living with rare disease: Experiences of diagnosis, health services use and needs for psychosocial support. Orphanet J Rare Dis. 2013;8(1):1–9.
Molster C, Urwin D, Di Pietro L, Fookes M, Petrie D, Van Der Laan S et al. Survey of healthcare experiences of Australian adults living with rare diseases. Orphanet J Rare Dis [Internet]. 2016;11(1):1–12. http://dx.doi.org/10.1186/s13023-016-0409-z.
Bogart KR, Irvin VL. Health-related quality of life among adults with diverse rare disorders. Orphanet J Rare Dis. 2017;12(1):177.
Bryson BA, Bogart KR. Social Support, Stress, and Life Satisfaction Among Adults With Rare Diseases. Heal Psychol. 2020;39(10):912–20.
Gimenez-Lozano C, Páramo-Rodríguez L, Cavero-Carbonell C, Corpas-Burgos F, López-Maside A, Guardiola-Vilarroig S et al. Rare Diseases: Needs and Impact for Patients and Families: A Cross-Sectional Study in the Valencian Region, Spain. Int J Environ Res Public Health. 2022;19(16).
Uhlenbusch N, Löwe B, Härter M, Schramm C, Weiler-Normann C, Depping MK. Depression and anxiety in patients with different rare chronic diseases: A cross-sectional study. PLoS ONE. 2019;14(2):1–17.
Uhlenbusch N, Löwe B, Depping MK. Perceived burden in dealing with different rare diseases: A qualitative focus group study. BMJ Open. 2019;9(12):1–9.
Delaye J, Cacciatore P, Kole A. Valuing the Burden and Impact of Rare Diseases: A Scoping Review. Front Pharmacol. 2022;13(June):1–10.
Sudlow C, Gallacher J, Allen N, Beral V, Burton P, Danesh J, et al. UK Biobank: An Open Access Resource for Identifying the Causes of a Wide Range of Complex Diseases of Middle and Old Age. PLoS Med. 2015;12(3):1–10.
di Lego V. Uncovering the gender health data gap. Cad Saude Publica. 2023;39(7):7–10.
European Organisation for Rare Diseases (for European Public Health Alliance). Gender inequalities and discrimination in rare diseases: a double threat to women’s health and wellbeing [Internet]. 2022. https://epha.org/gender-inequalities-and-discrimination-in-rare-diseases-a-double-threat-to-womens-health-and-wellbeing/.
Fry A, Littlejohns TJ, Sudlow C, Doherty N, Adamska L, Sprosen T, et al. Comparison of Sociodemographic and Health-Related Characteristics of UK Biobank Participants with Those of the General Population. Am J Epidemiol. 2017;186(9):1026–34.
Rath A, Olry A, Dhombres F, Brandt MM, Urbero B, Ayme S. Representation of rare diseases in health information systems: The orphanet approach to serve a wide range of end users. Hum Mutat. 2012;33(5):803–8.
Patrick MT, Bardhi R, Zhou W, Elder JT, Gudjonsson JE, Tsoi LC. Enhanced rare disease mapping for phenome-wide genetic association in the UK Biobank. Genome Med [Internet]. 2022;14(1):1–13. https://doi.org/10.1186/s13073-022-01094-y.
Vadivelu N, Kai AM, Kodumudi G, Babayan K, Fontes M, Burg MM. Pain and Psychology — A Reciprocal Relationship. Ochsner J. 2017;17(2):173–80.
Harris MA. The relationship between physical inactivity and mental wellbeing: Findings from a gamification-based community-wide physical activity intervention. Heal Psychol Open. 2018;5(1).
Singh B, Olds T, Curtis R, Dumuid D, Virgara R, Watson A et al. Effectiveness of physical activity interventions for improving depression, anxiety and distress: An overview of systematic reviews. Br J Sports Med. 2023;1203–9.
Siegmund LA, Distelhorst KS, Bena JF, Morrison SL. Relationships between physical activity, social isolation, and depression among older adults during COVID-19: A path analysis. Geriatr Nurs (Minneap). 2021;42(5):1240–4.
Soares CN, Zitek B. Reproductive hormone sensitivity and risk for depression across the female life cycle: A continuum of vulnerability? J Psychiatry Neurosci. 2008;33(4):331–43.
Rare Diseases Alliance Survey (Enquête de l’Alliance Maladies Rares). Diagnostic odyssey in rare diseases (L’errance diagnostique dans les maladies rares) [Internet]. 2016. .
Smith DT, Mouzon DM, Elliott M. Reviewing the Assumptions About Men’s Mental Health: An Exploration of the Gender Binary. Am J Mens Health. 2018;12(1):78–89.
Boerma T, Hosseinpoor AR, Verdes E, Chatterji S. A global assessment of the gender gap in self-reported health with survey data from 59 countries. BMC Public Health [Internet]. 2016;16(1):1–9. http://dx.doi.org/10.1186/s12889-016-3352-y.
Mausbach BT, Decastro G, Schwab RB, Tiamson-Kassab M, Irwin SA. Healthcare use and costs in adult cancer patients with anxiety and depression. Depress Anxiety. 2020;37(9):908–15.
Department of Health Ireland. Minister for Health announces the establishment of the National Rare Disease Steering Group. 2023.
Angin C, Mazzucato M, Weber S, Kirch K, Abdel Khalek W, Ali H et al. Coding undiagnosed rare disease patients in health information systems: recommendations from the RD-CODE project. Orphanet J Rare Dis [Internet]. 2024;19(1):1–9. https://doi.org/10.1186/s13023-024-03030-2.

S1.png
Figure S1 - Comparing the proportion of individuals with no diagnosis (ND), non-rare diagnoses (NRD) or rare diagnoses (RD) who reported specific degrees of happiness with their own health, stratified by gender (Table S5). F = Female, M = Male.
S2.png
Figure S2 - Comparing the proportion of males and females with no diagnosis (ND), non-rare diagnoses (NRD) or rare diagnoses (RD) who reported unhappiness with their own health (moderately, very or extremely) (Table S5). ns = not significant.
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Anxiety and depression is common in individuals living with a rare disease: exploring the impact of pain and physical activity in UK Biobank data

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Abstract

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Introduction

Methods

Participants

Classification of participants

Statistics

UK Biobank Parameters

The following UK Biobank parameters were assessed:

Results

Discussion

Conclusion

Abbreviations

Declarations

References

Supplementary Files

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