10. tbl. 108. árg. 2022
Cohort study on the experiences of cancer diagnosis and treatment in Iceland in the years 2015-2019
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 Sciences, University of Iceland, 3Reykjavik University, 4Health Science 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.
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.
Table I. Characteristics of the study participants, who were diagnosed with cancer in Iceland in the years 2015-2019
|
|
Total1 (N=1672) |
Men (N=704) |
Women (N=956) |
p-value |
| Age | Mean (SD)2 | Mean (SD) | Mean (SD) |
|
| Age at study entry | 62.6 (11,7) | 66.0 (10,7) | 60.0 (11,8) | <0.001 |
| Age at diagnosis | 59.2 (12,1) | 62.6 (11,2) | 56.7 (2,1) | <0.001 |
| Residence3 | N (%) | N (%) | N (%) |
|
| Capital area | 992 (64%) | 428 (65%) | 560 (63%) | 0.81 |
| Urban area (≥5000 inhabitants) | 237 (15%) | 103 (16%) | 134 (15%) |
|
| Urban area (200−<5000 inhabitants) | 247 (16%) | 103 (16%) | 143 (16%) |
|
| Rural area (<200 inhabitants) | 74 (5%) | 28 (4%) | 46 (5%) |
|
| Education4 | N (%) | N (%) | N (%) |
|
| Primary school | 273 (18%) | 78 (12%) | 194 (22%) | <0.001 |
| Secondary school | 291 (19%) | 96 (15%) | 194 (22%) |
|
| Vocational education | 312 (20%) | 226 (35%) | 86 (10%) |
|
| University | 555 (36%) | 204 (31%) | 348 (40%) |
|
| Other | 100 (7%) | 49 (8%) | 51 (6%) |
|
| Relationship status5 | N (%) | N (%) | N (%) |
|
| Married or cohabiting | 1222 (79%) | 556 (86%) | 651 (74%) | <0.001 |
| Not in a relationship | 317 (21?%) | 93 (14%) | 224 (26%) |
|
| Children under 18 years at home6 | N (%) | N (%) | N (%) |
|
| Yes | 258 (17%) | 83 (13%) | 174 (20%) | <0.001 |
| No | 1292 (83%) | 580 (88%) | 708 (80%) |
|
| Diagnosed with other disease before cancer diagnosis7 |
N (%) |
N (%) |
N (%) |
|
| Yes | 925 (58%) | 399 (60%) | 525 (58%) | 0.73 |
| No | 663 (42%) | 278 (41%) | 381 (42%) |
|
Numbers may not always add up to 100% due to rounding.
1Information about gender was missing for 12 participants
2SD = Standard Deviation
3Information about residence was missing for 122 participants
4Information about education was missing for 234 participants
5Information about relationship status was missing for 133 participants
6Information about having children under 18 years old at home was missing for 122 participants
7Information about being diagnosed previously with other disease was missing for 84 participants
Table II. Pre-diagnostic phase and the procedure of being diagnosed with cancer among participants diagnosed in 2015 to 2019
|
|
|
Total1 (N=1672) |
Men (N=704) |
Women (N=956) |
p-value | |
| Where in the health care system did the physician work, who gave you information about cancer diagnosis | |
|||||
| Primary health care | 238 (14%) | 135 (19%) | 101 (11%) | <0.001 | ||
| Outpatient clinic | 361 (22%) | 221 (31%) | 139 (15%) |
|
||
| Hospital | 785 (47%) | 269 (38%) | 512 (53%) |
|
||
| Elsewhere | 286 (17%) | 78 (11%) | 208 (22%) |
|
||
| How did you receive the information about cancer diagnosis? | |
|||||
| During a doctor’s appointment | 1108 (67%) | 518 (74%) | 583 (61%) | <0.001 | ||
| By phone call | 409 (25%) | 151 (22%) | 258 (27%) |
|
||
| In a letter | 7 (0,4%) | 0 (0%) | 7 (0,7%) |
|
||
| In another way | 142 (9%) | 34 (5%) | 108 (11%) |
|
||
| Where you advised to have someone close to you with you when you were invited to the doctor’s appointment?2 | |
|||||
| Yes | 531 (52%) | 190 (40%) | 339 (62%) | <0.001 | ||
| No | 420 (41%) | 251 (53%) | 165 (30%) |
|
||
| Not applicable in my case | 81 (8%) | 37 (8%) | 44 (8%) |
|
||
| How did it go when you were informed about the cancer diagnosis? | |
|||||
| It went very well/alright | 1285 (77%) | 585 (83%) | 696 (73%) | <0.001 | ||
| On average well | 184 (11%) | 59 (8%) | 125 (13%) |
|
||
| Very/rather badly | 199 (12%) | 59 (8%) | 138 (14%) |
|
||
| Did you feel you needed support from health care staff because of how you were feeling mentally? | |
|||||
| Yes | 768 (47%) | 229 (33%) | 535 (58%) | <0.001 | ||
| No | 857 (53%) | 462 (67%) | 393 (42%) |
|
||
| How did the process start that lead to your diagnosis with cancer? | |
|||||
| I went to the physician for another reason | 333 (20%) | 219 (31%) | 112 (12%) | <0.001 | ||
| I attended cancer screening | 248 (15%) | 31 (4%) | 217 (23%) |
|
||
| I was being treated for another disease in a hospital | 41 (3%) | 22 (3%) | 19 (2%) |
|
||
| I was hospitalized as the result of an emergency | 56 (3%) | 32 (5%) | 24 (3%) |
|
||
| A relative/friend told me to see a physician | 61 (4%) | 39 (6%) | 22 (2%) |
|
||
| I felt discomfort/symptoms and visited a physician | 701 (42%) | 250 (36%) | 447 (47%) |
|
||
| Other | 229 (14%) | 108 (15%) | 121 (13%) |
|
||
| How long did it take from when you first learned that you might have cancer until it was confirmed | |
|||||
| Less than 7 days | 564 (35%) | 269 (40%) | 292 (32%) | 0.002 | ||
| 7-14 days | 510 (32%) | 200 (30%) | 308 (34%) |
|
||
| 2-4 weeks | 289 (18%) | 100 (15%) | 188 (21%) |
|
||
| 1-2 months | 125 (8%) | 51 (8%) | 74 (8%) |
|
||
| More than 2 months | 107 (7%) | 51 (8%) | 56 (6%) |
|
||
| How long did it take from experiencing symptoms or discomfort until you met with a physician? | |
|||||
| Less than a month | 191 (54%) | 33 (35%) | 158 (61%) | <0.001 | ||
| 1-6 months | 119 (33%) | 39 (41%) | 79 (30%) |
|
||
| 7-12 months | 21 (6%) | 10 (11%) | 11 (4%) |
|
||
| More than one year | 26 (7%) | 13 (14%) | 13 (5%) |
|
||
Numbers may not always add up to 100% due to rounding.
1Information about gender was missing for 12 participants
2Only those who got an invitation to a doctor’s appointment, received this question
Table III. Method of receiving information about cancer diagnosis by residence, among participants diagnosed in 2015 to 2019
|
|
Capital area | Urban area (≥5000) | Urban area (<5000) | Rural area (<200) | p-value |
| How did you receive the information about cancer diagnosis? | |||||
| During a doctor’s appointment | 689 (68%) | 165 (69%) | 148 (59%) | 48 (65%) | 0.01 |
| By phone call | 222 (22%) | 57 (24%) | 87 (35%) | 21 (28%) |
|
| In another way | 97 (9%) | 18 (7%) | 15 (6%) | 5 (5%) |
|
Table IV. Providing information about the cancer treatment among participants diagnosed in 2015 to 2019
|
|
Total | Men | Women | p-value |
| How did it go, getting information that you requested from health care staff? | ||||
| Very well or rather well | 1274 (84%) | 584 (91%) | 686 (78%) | <0.001 |
| On average, very poorly or rather poorly | 247 (16%) | 56 (9%) | 190 (22%) |
|
| To what extent has there been privacy to discuss with health care staff? | ||||
| To most or all extent | 1167 (80%) | 529 (87%) | 634 (75%) | <0.001 |
| To a little, somewhat, or not at all | 298 (20%) | 81 (13%) | 216 (25%) |
|
| To what extent has there been good facilities to discuss with health care staff? | ||||
| To most or all extent | 1143 (78%) | 534 (87%) | 605 (71%) | <0.001 |
| To a little, somewhat, or not at all | 328 (22%) | 81 (13%) | 246 (29%) |
|
| To what extent have you had the opportunity to discuss your disease and treatment in detail with health care staff? | ||||
| To most or all extent | 1015 (71%) | 470 (79%) | 541 (65%) | <0.001 |
| To a little, somewhat, or not at all | 410 (29%) | 122 (21%) | 287 (35%) |
|
Table V. Association between year of diagnosis and length of time between cancer diagnosis and initiation of first treatment, examined by prevalence ratio (PR) and 95% confidence interval (CI)
|
|
|
Number (%) | PR (95% CI) |
|
||
|
|
|
Time between cancer diagnosis and initiation of first treatment |
|
|
||
| Year of diagnosis |
|
Less than a month |
|
More than a month |
|
|
| 2015 |
|
126 (64%) |
|
72 (36%) | Reference |
|
| 2016 |
|
151 (62%) |
|
92 (38%) | 1.04 (0.85-1.28) |
|
| 2017 |
|
157 (60%) |
|
100 (40%) | 1.11 (0.91-1.36) |
|
| 2018 |
|
177 (60%) |
|
120 (40%) | 1.11 (0.92-1.35) |
|
| 2019 |
|
148 (49%) |
|
157 (51%) | 1.42 (1.18-1.69) |
|
