Health-Related Quality of Life, lifestyle, and pain – The ICEPAIN study

About the project

The project is focused on building an extensive database on health-related quality of life (HRQoL), lifestyle, and pain among the general population in Iceland. The project is a longitudinal study that started with a cross-sectional data collection and will be followed by a similar data collection after 5 and 10 years from participants who have agreed to be contacted again.

The database was constructed to collect information on HRQoL and some aspects concerning people’s general lifestyle such as employment, consumption of tobacco, alcohol, and other substances as well as information on the experience of chronic illness and stressful trauma such as accidents and violence. Participants were also asked about their experience of pain, the nature and spread of pain, effects on daily life and quality of life as well as access to and use of health care.

The data collection was in the form of a digital questionnaire. The sample was based on a group of respondents from the data collection company MASKÍNA (Þjóðargátt). The sample was stratified according to age, gender, and residence. The first phase of data collection (ICEPAIN 1) took place in the summer of 2021 where data was collected from 5,550 individuals and 4,500 (81%) agreed to be contacted again later for further data collection. The second wave (ICEPAIN-2) in fall 2026 will again use an online survey, targeting 12,000 adults: approximately 4,500 recontacted ICEPAIN-1 participants and 7,500 new individuals randomly drawn from a national panel. Linking ICEPAIN-1 and ICEPAIN-2 will enable five-year longitudinal analyses of pain development and its associations with lifestyle and psychosocial risk and protective factors.

The database already contains valuable information on HRQoL, lifestyle, and pain among the general population in Iceland, and provides research opportunities on the complex interaction of all these factors and long-term development. By following the participants over time, it will be possible to examine the progress and interaction of HRQoL with various aspects of people's lifestyle, and pain over a long time.

In addition to collecting quantitative data with questionnaires, specific groups of participants that have agreed to be contacted again will be invited to participate in qualitative research on various aspects of HRQoL, lifestyle, and pain.

The scientific value of this study is in adding and deepening knowledge of the complex interaction of HRQoL of life, lifestyle, and pain and how these factors interact over time.

The ICEPAIN 1 study was approved by The Icelandic National Bioethics Committee (VSNb2019040012/03.01) and funded by the University of Akureyri Research Fund and the Public Health Fund (Lýðheilsusjóður). ICEPAIN 2 has also been approved (VSN2505016).

Members

• Dr. Þorbjörg Jónsdóttir, Associate Professor, School of Health, Business and Natural Sciences, University of Akureyri
• Dr. Sigfríður Inga Karlsdóttir, Professor, School of Health, Business and Natural Sciences, University of Akureyri
• Dr. Hafdís Skúladóttir, Associate Professor, School of Health, Business and Natural Sciences, University of Akureyri
• Dr. Eva Halapi, Associate Professor, School of Health, Business and Natural Sciences, University of Akureyri
• Dr. Karen Birna Þorvaldsdóttir, lektor við Heilbrigðis, viðskipta- og raunvísindasvið HA
• Guðmundur Kristján Óskarsson, Associate Professor, School of Health, Business and Natural Science, University of Akureyri

Collaborators

• Dr. Deepak Ravindran, Teesside University
• Dr. Mads U. Werner, Multidisciplinary Pain Center, Copenhagen University Hospital.
• Dr. Christopher Sivert Nielsen, Norwegian Institute of Public Health
• Dr. Tammy Klassen-Ross, University of Northern British Columbia

Publications

• Jonsdottir, T., Karlsdottir, S., Skuladottir, H., Halapi, E. & Oskarsson, G. (2025). Exploring the complexities of chronic pain: The ICEPAIN study on prevalence, lifestyle factors, and quality of life in a general population. Scandinavian Journal of Pain, 25(1), 20240056.
• Karlsdottir, S. I., Halapi, E., Oskarsson, G. K., Skuladottir, H., og Jonsdottir, T. (2025). Pain and health-related quality of life among women of childbearing age in Iceland: ICEPAIN, a nationwide survey. Scandinavian journal of pain, 25(1), 10.1515/sjpain-2024-0073.
• Skúladóttir, H., Óskarsson, G. K., Jónsdóttir, T., Karlsdóttir, S. I., og Halapi, E. (2025). Chronic pain and quality of life among people with whiplash injury in Iceland. International journal of circumpolar health, 84(1), 2556085.
• Vera Sif Rúnarsdóttir, Eva Charlotte Halapi, og Þorbjörg Jónsdóttir. (2025). Sálræn áföll í æsku og heilsufarsvandi á fullorðinsárum. Læknablaðið, 111(6), 269–277.

• Vigdís Hlíf Pálsdóttir, Þorbjörg Jónsdóttir og Guðmundur Kristján Óskarsson. (2023). Tengsl langvinnra verkja á fullorðinsárum og sálrænna áfalla í æsku. Læknablaðið, 109(2), 67-73.

Media coverage

Fréttablaðið 24 June 2021. News, Tengsl langvarandi verkja við lífshætti og heilsutengd lífsgæði rannsökuð (The relationship between chronic pain and lifestyle and health-related quality of life studied).

Morgunblaðið 7 August 2021. Submitted article: Lífshættir og verkir meðal almennings á Íslandi (Submitted article: Lifestyle and pain among the general public in Iceland).

Morgunblaðið 8 February 2023. News, Tengsl eru á milli verkja og áfalla (News, There is a connection between pain and trauma).

Kastljós 3 March 2021. Inteview with Vigdísi Hlíf Pálsdóttur. Áföll í æsku geta haft áhrif á langvinna verki (Childhood trauma can affect chronic pain).

Mannlegi þátturinn 22. Maí 2024 – Interview with Veru Sif Rúnarsdóttur. Tengsl áfalla við heilsufar (Relationships between Adverse Childhood Experiences (ACE) and health in adulthood). 

Oral conference presentations

Verkir, svefn og heilsutengd lífsgæði kvenna á barneignaaldri. (Pain, sleep and health-related quality of life among women of childbearing age) Sjónaukinn, ráðstefna Heilbrigðis- viðskipta og raunvísindasviðs HA 19.-20. maí 2025. (Icelandic)

ICEPAIN rannsóknin: Verkir, lífshættir og heilsutengd lífsgæði meðal almennings á Íslandi. (ICEPAIN Study: Pain, Lifestyle and Health Related Quality of Life Among the General Population of Iceland) – Þjóðarspegillinn 2024. The Social Science Research Institute, University of Iceland, Reykjavik 31. Oct-1. Nov., 2024. (Icelandic)

Algengi og áhrif verkja á lífsgæði ungra kvenna á Íslandi (Prevalence and impact of pain on quality of life among young women in Iceland). Þjóðarspegillinn 2024. Félagsvísindasvið Háskóla Íslands, Reykjavik 31. október-1. nóvember, 2024. (Icelandic)

Áhrif liðskiptaaðgerða í hné og mjöðm á heilsutengd lífsgæði, verki og truflandi áhrif verkja: ICEPAIN rannsóknin (The impact of knee and hip joint replacement surgery on health-related quality of life, pain, and pain-related interference: The ICEPAIN study). – Sjónaukinn, ráðstefna Heilbrigðis- viðskipta og raunvísindasviðs HA 15.-16. maí 2024.

Tíðni og styrkur verkja meðal kvenna á barneignaaldri á Íslandi. – Sjónaukinn, ráðstefna Heilbrigðis- viðskipta og raunvísindasviðs HA 15.-16. maí 2024. (Icelandic)

Chronic pain and adverse life experiences. NCNR 2023 – Nordic conference in Nursing, Reykjavík, 2.-4. October 2023.

Pain, lifestyle, and Health-Related Quality of life in Icelandic general population, the ICEPAIN study. NCNR 2023 – Nordic conference in Nursing, Reykjavík, 2.-4. October 2023.

Relationship between sleep and health-related quality of life and chronic pain. [Tengsl svefns við heilsutengd lífsgæði og langvinna verki]. Hjúkrun 2023, The Icelandic Nurses‘ Association, Reykjavík, 28.-29. sept 2023. (Icelandic)

The relationship between sleep and health-related quality of life and chronic pain. [Tengsl svefns við heilsutengd lífsgæði og langvinna verki]. Sjónaukinn, The annual conference of the School of Health Science HA. 16.-17. Mai 2023. (Icelandic)

Longterm consequences of whiplash associated disorders on health-related quality of life and pain (Langtíma afleiðingar hálshnykksáverka á heilsutengd lífsgæði og verki). Sjónaukinn 2023: The annual conference of the School of Health Sciences HA. 16.-17. May 2023.

Health-related quality of life, lifestyle and pain – first results [Heilsutengd lífsgæði, lífshættir og verkir – fyrstu tölur] Sjónaukinn 2022: The annual conference of the School of Health Science HA, Akureyri 19.-20. May 2022 (Icelandic)

Prevalence and nature of pain among general public of Iceland. [Algengi og eðli verkja meðal almennings á Íslandi]. Hjúkrun 2022, The Icelandic Nurses‘ Association, Reykjavík, 29.-30. Mars 2022. (Icelandic)

Relationships between chronic pain and adverse life experiences [Tengsl langvinnra verkja og sálrænna áfalla – kynning á rannsókn]. The annual conference of the School of Health Science HA. 20.-21. Maí 2021