The Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship registry: Scope, rationale and design of an infrastructure for the study of physical and psychosocial outcomes in cancer survivorship cohorts

Poll‐Franse, Lonneke V. van de; Horevoorts, Nicole; Eenbergen, Mies van; Denollet, Johan; Roukema, Jan A.; Aaronson, Neil K.; Vingerhoets, A.J.J.M.; Coebergh, Jan Willem; Vries, Jolanda De; Essink‐Bot, Marie‐Louise; Mols, Floortje

doi:10.1016/j.ejca.2011.04.034

Cited by 338 publications

(303 citation statements)

References 31 publications

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“…42 All cancer patients archived in the Eindhoven cancer registry were asked to complete questionnaires whose objective was to investigate the physical and psychosocial impact of the cancer, and the involvement of patients' physicians in improving survivorship. 42 Other aspects need to be considered when organising and conducting surveys: (a) in some countries the survivor may not always be aware that he/she was diagnosed with cancer so in those situations the survivor's general practitioner or clinician must be contacted first; (b) national confidentiality laws may prevent cancer registries from contacting cancer patients; (c) if nonparticipation levels are high, the survey could provide false (biased) results. The PROFILES studies had 75-80% participation rates, 42 while other important studies in Norway, 39 the UK 32 and Ireland 33 had lower participation rates (50-55%).…”

Section: Discussionmentioning

confidence: 99%

Cancer rehabilitation indicators for Europe

Baili

Hoekstra-Weebers²,

Hoof

et al. 2013

European Journal of Cancer

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Little is known of cancer rehabilitation needs in Europe. EUROCHIP-3 organised a group of experts to propose a list of population-based indicators used for describing cancer rehabilitation across Europe. The aim of this study is to present and discuss these indicators. A EUROCHIP-3 expert panel reached agreement on two types of indicators. (a) Cancer prevalence indicators. These were proposed as a means of characterising the burden of cancer rehabilitation needs by time from diagnosis and patient health status. These indicators can be estimated from cancer registry data or by collecting data on follow-up and treatments for samples of cases archived in cancer registries. (b) Indicators of rehabilitation success. These include: return to work, quality of life, and satisfaction of specific rehabilitation needs. Studies can be performed to estimate these indicators in individual countries, but to obtain comparable data across European countries it will be necessary to administer a questionnaire to randomly selected samples of patients from population-based cancer registry databases. However, three factors complicate questionnaire studies: patients may not be aware that they have cancer; incomplete participation in surveys could lead to bias; and national confidentiality laws in some cases prohibit cancer registries from approaching patients. Although these studies are expensive and difficult to perform, but as the number of cancer survivors increases, it is important to document their needs in order to provide information on cancer control.

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Section: Discussionmentioning

confidence: 99%

Cancer rehabilitation indicators for Europe

Baili

Hoekstra-Weebers²,

Hoof

et al. 2013

European Journal of Cancer

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“…Data were collected via PROFILES (Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship). Details of the PROFILES data collection method have been described [19]. Briefly, eligible survivors received an invitation letter with a link to a secure website, a login name, and a password to provide informed consent and to complete questionnaires online.…”

Section: Data Collectionmentioning

confidence: 99%

Identifying the subtypes of cancer-related fatigue: results from the population-based PROFILES registry

et al. 2017

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Purpose Little research has been done to identify possible cancer-related fatigue (CRF) subtypes and to classify cancer survivors accordingly. We aimed to identify CRF subtypes in a large population-based sample of (long term) stage I-III colorectal cancer survivors. We also identified factors associated with the CRF subtypes. Methods Respondents completed the Multidimensional Fatigue Inventory and other validated questionnaires on anxiety and reduced positive affect (anhedonia), sleep quality, and lifestyle factors (body mass index and physical activity). Latent class analysis was used to derive the CRF subtypes.Factors associated with the derived CRF subtypes were determined with multinomial logistic regression. Results Three CRF classes were identified: class 1 (no fatigue and distress, n = 644, 56%), class 2 (low fatigue, moderate distress, n = 256, 22%), and class 3 (high fatigue, moderate distress, n = 256, 22%). Multinomial logistic regression results show that survivors in class 3 were more likely to be female, were treated with radiotherapy, have comorbid diabetes mellitus, and be overweight/obese than survivors in class 1 (reference). Survivors in classes 2 and 3 were also more likely to have comorbid heart condition, report poorer sleep quality, experience anhedonia, and report more anxiety symptoms when compared with survivors in class 1. Conclusions Three distinct classes of CRF were identified which could be differentiated with sleep quality, anxiety, anhedonia, and lifestyle factors. Implications for cancer survivors The identification of CRF subtypes with distinct characteristics suggests that interventions should be targeted to the CRF subtype.

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“…Still, selection bias could not be excluded completely. Overall, we succeeded in including about 75% of the patients within the profiles group 16 . In the present study, the survey materials included an extensive sexuality questionnaire, and partners of the women were also invited to respond, which might have lowered the participation rate.…”

Section: Discussionmentioning

confidence: 99%

“…Standard information was gathered by the Comprehensive Cancer Centre South. The data were collected in 2012 into profiles, a registry for the study of the physical and psychosocial effects of cancer and its treatment, representing a dynamic, growing, population-based cohort of both short-and long-term cancer survivors 16 . The profiles registry has a large Web-based component (http:// www.profilesregistry.nl/) and is linked directly to clinical data from the ecr.…”

Section: Data Collectionmentioning

confidence: 99%