Reference data of the EORTC QLQ-C30 questionnaire: Five consecutive annual assessments of approximately 2000 representative dutch men and women

Objective. Cancer and its treatment have an influence on health-related quality of life (HRQOL). Normative data could help to interpret HRQOL among cancer patients. Our aim was to generate longitudinal normative data based on sex, age and morbidity for the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 questionnaire. Methods. The QLQ-C30 and the Self-administered Comorbidity Questionnaire were administered to a representative panel of the Dutch-speaking population in the Netherlands in 2009 (n = 1743), 2010 (n = 2050), 2011 (n = 2040), 2012 (n = 2194) and 2013 (n = 2333). Results. Regarding sex, at baseline, women scored statistically significant and clinically relevant worse on fatigue, pain and insomnia compared to men. Regarding age groups and sex, HRQoL was lower among the older age groups in men and women. For men, at baseline, significant and clinically relevant age differences were found on physical, role and cognitive functioning, global QOL scale, fatigue, pain and dyspnea. The change over 5 years was larger for older age groups. For women, at baseline, significant and clinically relevant age differences were found on physical functioning, role functioning, nausea/vomiting, pain, dyspnea and insomnia. Those without self-reported morbidities reported a better HRQoL compared to those with morbidities. Among those who completed five assessments, the summary scale scores were stable over time, were higher in men than in women, and higher in younger compared to older age groups. Conclusions. Although HRQoL remains relatively stable over time, HRQoL data needs to be interpreted with care as many confounding factors can have an impact on HRQOL. Our data (which is freely available) can aid in the interpretation of QLQ-C30 scores and can help increase our understanding of the influence of age, sex, time and morbid conditions on HRQoL among cancer patients

Physical Activity is Associated with Health Related Quality of Life in Lymphoma Survivors Regardless of Body Mass Index; Results from the Profiles Registry

Background: Being obese and having a sedentary lifestyle is associated with impaired health-related quality of life (HRQoL) among cancer survivors. The aim of the present study is to investigate the combined influence of body mass index (BMI) and physical activity on HRQoL in lymphoma survivors. Methods: Lymphoma survivors diagnosed between 1999 and 2012 were invited to complete questionnaires about body height and weight, physical activity and HRQoL using the EORTC QLQ-C30. Multivariable analyses were conducted to evaluate the association of BMI and physical activity on HRQoL. Results: 1.339 lymphoma survivors responded (response rate of 72%) of whom 43% had a healthy weight, 41% were overweight and 14% were obese. They spent on average 10 h, on moderate to vigorous physical activity (MVPA) per week. Multivariable linear regression analysis shows that relatively high active survivors reported higher HRQoL scores and less fatigue compared to relatively low active lymphoma survivors, regardless of BMI. Conclusion: MVPA was associated with higher HRQoL in lymphoma survivors regardless of BMI. Further studies, are needed to investigate effects of healthy lifestyle changes to improve HRQoL in lymphoma survivors. Research in understanding association of lifestyle factors may guide future support for lymphoma cancer survivors

AYAs' online information and eHealth needs: A comparison with healthcare professionals' perceptions

Abstract Background Adolescents and young adults (AYAs) diagnosed with cancer fulfill their cancer‐related information needs often via the Internet. Healthcare professionals (HCPs) have a crucial role in guiding patients in finding appropriate online information and eHealth sources, a role that is often overlooked. Misperceptions of AYAs' needs by HCPs may lead to suboptimal guidance. We aimed to examine the extent to which AYAs' online information and eHealth needs corresponded with HCPs' perceptions of these needs. Methods Two cross‐sectional online surveys (AYAs, n = 299; HCP, n = 80) on online information and eHealth needs were conducted. HCPs provided indications of their perceptions of AYA's needs. Results AYAs reported significantly more online information needs compared with HCPs' perceptions regarding: survival rates (AYA = 69%, HCP = 35%, p < 0.001), treatment guidelines (AYA = 65%, HCP = 41%, p < 0.001), return of cancer (AYA = 76%, HCP = 59%, p = 0.004), “what can I do myself” (AYA = 68%, HCP = 54%, p = 0.029), and metastases (AYA = 64%, HCP = 50%, p = 0.040). Significantly more unmet eHealth needs were reported by AYAs compared with HCPs relating to access to own test results (AYA = 25, HCP = 0%, p < 0.001), request tests (AYA = 30%, HCP = 7%, p < 0.001), medical information (AYA = 22%, HCP = 0%, p = 0.001), e‐consult with nurses (AYA = 30%, HCP = 10%, p < 0.001), e‐consult with physicians (AYA = 38%, HCP = 13%, p = 0.001), and request prescriptions (AYA = 33%, HCP = 21%, p = 0.009). Conclusion AYAs' online information and eHealth needs are partially discrepant with the impression HCPs have, which could result in insufficient guidance related to AYAs' needs. AYAs and HCPs should get guidance regarding where to find optimal information in a language they understand. This may contribute to AYAs' access, understanding, and satisfaction regarding online information and eHealth

Differences in internet use and ehealth needs of adolescent and young adult versus older cancer patients: Results from the profiles registry

Background: Our aim was to evaluate differences in cancer-related internet patterns between AYAs (adolescents and young adults; 18–39 years at time of diagnosis) and older adult cancer patients (40+ years). Methods: Cross-sectional surveys were distributed among AYA and older adult cancer patients regarding cancer-related internet use and eHealth needs. Results: 299 AYAs (mean age 31.8 years) and 270 older adults (mean age 55.8 years) participated. AYAs searched significantly more often on the internet on a daily basis just before diagnosis (45% vs. 37%), right after diagnosis (71% vs. 62%) and during treatment (65% vs. 59%) compared to older adults. During follow up, there was a trend that AYAs searched less often on the internet compared to older adults (15% vs. 17%). AYAs searched more often on topics, such as alternative or complementary therapies, treatment guidelines, fertility, end of life, sexuality and intimacy, lifestyle and insurance. AYAs felt significantly better informed (75%) after searching for cancer-related information compared to older adults (65%) and had significantly less unmet needs regarding access to their own medical information (22% vs. 47%). AYAs search more on the internet on a daily basis/several times per week in the diagnosis and treatment phase than older cancer patients. They search on different topics than older adults and seems to have less unmet eHealth needs.It is important that these are easy to find and reliable

Differences in Internet use and eHealth needs of adolescent and young adult versus older cancer patients: Results from the PROFILES registry

Background: Our aim was to evaluate differences in cancer-related internet patterns between AYAs (adolescents and young adults; 18–39 years at time of diagnosis) and older adult cancer patients (40+ years). Methods: Cross-sectional surveys were distributed among AYA and older adult cancer patients regarding cancer-related internet use and eHealth needs. Results: 299 AYAs (mean age 31.8 years) and 270 older adults (mean age 55.8 years) participated. AYAs searched significantly more often on the internet on a daily basis just before diagnosis (45% vs. 37%), right after diagnosis (71% vs. 62%) and during treatment (65% vs. 59%) compared to older adults. During follow up, there was a trend that AYAs searched less often on the internet compared to older adults (15% vs. 17%). AYAs searched more often on topics, such as alternative or complementary therapies, treatment guidelines, fertility, end of life, sexuality and intimacy, lifestyle and insurance. AYAs felt significantly better informed (75%) after searching for cancer-related information compared to older adults (65%) and had significantly less unmet needs regarding access to their own medical information (22% vs. 47%). AYAs search more on the internet on a daily basis/several times per week in the diagnosis and treatment phase than older cancer patients. They search on different topics than older adults and seems to have less unmet eHealth needs. It is important that these are easy to find and reliable

A Negative Body Image among Adolescent and Young Adult (AYA) Cancer Survivors: Results from the Population-Based SURVAYA Study

Adolescent and young adult (AYA) cancer survivors (18–39 years at diagnosis) often experience negative body changes such as scars, amputation, and disfigurement. Understanding which factors influence body image among AYA survivors can improve age-specific care in the future. Therefore, we aim to examine the prevalence, and association of a negative body image with sociodemographic, clinical, and psychosocial factors, among AYA cancer survivors (5–20 years after diagnosis). A population-based cross-sectional cohort study was conducted among AYA survivors (5–20 years after diagnosis) registered within the Netherlands Cancer Registry (NCR) (SURVAYA-study). Body image was examined via the EORTC QLQ-C30 and QLQ-SURV100. Multivariable logistic regression models were used. Among 3735 AYA survivors who responded, 14.5% (range: 2.6–44.2%), experienced a negative body image. Specifically, AYAs who are female, have a higher Body Mass Index (BMI) or tumor stage, diagnosed with breast cancer, cancer of the female genitalia, or germ cell tumors, treated with chemotherapy, using more maladaptive coping strategies, feeling sexually unattractive, and having lower scores of health-related Quality of Life (HRQoL), were more likely to experience a negative body image. Raising awareness and integrating supportive care for those who experience a negative body image into standard AYA survivorship care is warranted. Future research could help to identify when and how this support for AYA survivors can be best utilized