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454 L ÆKNABL AÐIÐ 2022/108
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E N G L I S H S U M M A R Y
Cohort study on the experiences of cancer diagnosis and treatment in Iceland in the years 2015-2019
INTRODUCTION: In the coming years, an increase in the number of cancer cases can be
expected in Iceland. It is important to gain more insight into the experiences of the diagnostic-
and treatment phase among those diagnosed with cancer to improve quality of life and life
expectancy.
METHODS: The study included 4575 individuals diagnosed with cancer between 2015 and 2019
in Iceland, 18 years or older at the time. Participants answered an on-line questionnaire once
between 2020 and 2021.
RESULTS: A total of 1672 (37%) individuals responded to the questionnaire. The mean age
at diagnosis was 59 years (±12). The majority of participants were informed on their cancer
diagnosis during a doctor’s appointment (67%), but a quarter (25%) received the information
by telephone. A total of 77% of participants were satisfied with the diagnostic process, thereof
relatively fewer women than men (73% vs. 83%) (p<0,001). Fewer of those who received the
cancer diagnosis by telephone were pleased with the diagnostic process (62%) compared with
those receiving information during a doctor’s appointment (85%) (p<0,001). More women (58%)
than men (33%) expressed the need for support regarding mental well-being from healthcare
professionals during the diagnostic process (p <0.001). In 2015, 36% of participants started
treatment more than month after diagnosis, compared with 51% in 2019. The need for various
specific resources during treatment, e.g. physiotherapy, psychological services or nutritional
counseling were regularly assessed among 20-30% of participants.
CONCLUSION: A quarter of respondents diagnosed with cancer received information about
the diagnosis over the phone instead of an interview. There is a suggestion that the time from
diagnosis to the start of cancer treatment is increasing. It is necessary to assess whether it is
possible to support individuals with cancer better during the diagnostic- and treatment phase
based on their individual needs.
doi 10.17992/lbl.2022.10.710
Jóhanna Torfadóttir1,2
Sigrún Eva Einarsdóttir1
Ásgeir R. Helgason1,3
Birna Þórisdóttir4
Rebekka Björg Guðmundsdóttir2
Anna Bára Unnarsdóttir2
Laufey Tryggvadóttir5,6
Helgi Birgisson5
Guðfinna Halla Þorvaldsdóttir1
1The Icelandic Cancer Society, 2Centre of Public Health Sci-
ences, University of Iceland, 3Reykjavik University, 4Health Sci-
ence Institute, 5ICS Research and Registration Center, 6Faculty
of Medicine, University of Iceland.
Correspondence:Jóhanna Torfadóttir, jet@hi.is
Key words: cancer, public health, cohort study, cancer diagnosis,
cancer treatment.