| 1. |
- Olsson, Maria, 1964, et al.
(författare)
-
Adolescent and young adult cancer survivors' perceptions of participating in a survey - Ethical and methodological considerations
- 2019
-
Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 39, s. 55-61
-
Tidskriftsartikel (refereegranskat)abstract
- Purpose: The aim of this study was to understand patient-reported perception of participation in a population-based web-survey focusing on sensitive issues for adolescent and young adult cancer survivors. Method: A population-based web survey for adolescent and young adult cancer survivors including a matched control group. Adolescent and young adult cancer survivors from the population-based Swedish National Cancer Registry from four of the six register holders at Regional Cancer Centers in Sweden. Controls were randomly identified from the Swedish National Population registry, from the same register holders. Result: Of 729 eligible participants, 540 completed the survey i.e. 74% participation rate. The study population included 285 adolescent and young adult cancer survivors and 255 matched controls. None of the participants answered that the survey had a very negative impact on them and a minority of 43 (7.9%) of the 540 responded that they were mildly negatively affected by their participation in the study. There was a no significant difference between patients and controls regarding the negative effect of the participation (p = 0.29). Positive experiences of participating in the study were widely expressed and most participants (95%) found the study valuable. Conclusions: These findings suggest that the benefits clearly outweigh the risks when adolescent and young adult cancer survivors participate in surveys including sensitive and trauma-related aspects, given that the study design is ethically sound and participants are approached carefully. We also present a modified ethical protocol for epidemiological surveys on adolescents and young adult cancer survivors.
|
|
| 2. |
- Olsson, Maria, 1964, et al.
(författare)
-
Self-Perceived physical attractiveness in relation to scars among adolescent and young adult cancer survivors : A population-based study
- 2018
-
Ingår i: Journal of Adolescent and Young Adult Oncology. - : Mary Ann Liebert. - 2156-5333 .- 2156-535X. ; 7:3, s. 358-366
-
Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: Cancer treatment may result in various effects that last long after treatment has been concluded. The purpose of this study was to explore to what extent scars affect adolescents and young adults postcancer treatment.METHODS: In this population-based study, a study-specific questionnaire was developed by a method used in several previous investigations carried out by our research group, Clinical Cancer Epidemiology. Question development involved expert validation by professionals from oncology units, midwives, epidemiologists, and statisticians. The questionnaire was developed in collaboration with adolescent and young adult cancer survivors. The topics covered in the questionnaire were as follows: psychosocial health, body image and sexuality, fertility, education, work, and leisure. The web-based questionnaire was sent to teenage and young adult cancer survivors and matched controls in Sweden.RESULTS: In this study, the relative risk of feeling less attractive due to scars was higher both for female cancer survivors RR 1.48, CI 1.05-2.08 and male cancer survivors RR 1.90, CI 1.15-3.13 compared to controls. The feeling of attractiveness was negatively related to the size of scars in both cancer and control groups. In a logistic regression analysis, significant associations were found between age, education, exercise, depression, and the feeling of low attractiveness due to scars.CONCLUSIONS: The results of this study provide a basis for care interventions for teenage and young adult cancer patients during and after cancer treatment. Further research is needed on care interventions to reduce, if possible, the impact of scars.
|
|
| 3. |
- Olsson, Maria, 1964, et al.
(författare)
-
Sexual function in adolescent and young adult cancer survivors-a population-based study
- 2018
-
Ingår i: Journal of cancer survivorship : research and practice. - : Springer Science and Business Media LLC. - 1932-2267 .- 1932-2259. ; 12:4, s. 450-459
-
Tidskriftsartikel (refereegranskat)abstract
- Previous research has established that treatments for cancer can result in short- and long-term effects on sexual function in adult cancer patients. The purpose was to investigate patient-reported physical and psychosexual complications in adolescents and young adults after they have undergone treatment for cancer.In this population-based study, a study-specific questionnaire was developed by a method used in several previous investigations carried out by our research group, Clinical Cancer Epidemiology. The questionnaire was developed in collaboration with adolescent and young adult cancer survivors (15-29years) and validated by professionals from oncology units, midwives, epidemiologists, and statisticians. The topics covered in the questionnaire were psychosocial health, body image, sexuality, fertility, education, work, and leisure. The web-based questionnaire was sent to adolescent and young adult cancer survivors and matched controls in Sweden.In this study, adolescent and young adult cancer survivors (15-29years) showed low satisfaction regarding sexual function compared to controls (P<0.01). Female adolescent and young adult cancer survivors had a statistically significant lower frequency of orgasm during sexual activity than the controls (P<0.01). Male adolescent and young adult cancer survivors had statistically significant lower sexual desire than the controls (P=0.04).We found that adolescent and young adult cancer survivors perceived themselves as being less satisfied with their sexual function than matched population-based controls.Adolescent and young adult cancer survivors need psychological rehabilitation support from the health care profession during and after cancer treatment to help them to reduce their reported poor sexual function to enhance a good sexual quality of life.
|
|
