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      The relation between information provision and health-related quality of life, anxiety and depression among cancer survivors: a systematic review

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          Abstract

          Background: Providing information that is congruent with patients’ needs is an important determinant for patient satisfaction and might also affect health-related quality of life (HRQoL) and anxiety and depression levels of cancer survivors.

          Design: The authors systematically reviewed the available literature on the relationship between information provision and HRQoL, anxiety and depression. A PubMed literature search for original articles published until February 2010 was carried out. Twenty-five articles, all conducted between 1996 and 2009, which met the predefined inclusion criteria, were subjected to a quality checklist.

          Results: Satisfied patients, patients with fulfilled information needs, and patients who experience less information barriers, in general have a better HRQoL and less anxiety and depression. Out of eight intervention studies that aimed to improve information provision, only one showed a positive association with better HRQoL.

          Conclusion: Health care providers must pay more attention to patient-centred information provision. Additional research is needed to make definitive conclusions about information interventions as most results did not reach statistical significance due to methodological constraints. The quick development of the relatively young research field of patient-reported outcomes in cancer survivorship will make it possible to conduct better quality studies in the future.

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          What are the unmet supportive care needs of people with cancer? A systematic review.

          James D Harrison, Jane M Young, Melanie A Price … (2009)
          The identification and management of unmet supportive care needs is an essential component of health care for people with cancer. Information about the prevalence of unmet need can inform service planning/redesign. A systematic review of electronic databases was conducted to determine the prevalence of unmet supportive care needs at difference time points of the cancer experience. Of 94 articles or reports identified, 57 quantified the prevalence of unmet need. Prevalence of unmet need, their trends and predictors were highly variable in all domains at all time points. The most frequently reported unmet needs were those in the activities of daily living domain (1-73%), followed by psychological (12-85%), information (6-93%), psychosocial (1-89%) and physical (7-89%). Needs within the spiritual (14-51%), communication (2-57%) and sexuality (33-63%) domains were least frequently investigated. Unmet needs appear to be highest and most varied during treatment, however a greater number of individuals were likely to express unmet need post-treatment compared to any other time. Tumour-specific unmet needs were difficult to distinguish. Variations in the classification of unmet need, differences in reporting methods and the diverse samples from which patients were drawn inhibit comparisons of studies. The diversity of methods used in studies hinders analysis of patterns and predictors of unmet need among people with cancer and precludes generalisation. Well-designed, context-specific, prospective studies, using validated instruments and standard methods of analysis and reporting, are needed to benefit future interventional research to identify how best to address the unmet supportive care needs of people with cancer.
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            Quality of life among long-term breast cancer survivors: a systematic review.

            Floortje Mols, Ad Vingerhoets, Jan Coebergh … (2005)
            The aim of this study was to review the literature on quality of life among long-term survivors of breast cancer and identify the specific aspects of quality of life that were affected in these survivors. We also describe predictors of quality of life. Published research reports were included if they described the quality of life of breast cancer survivors diagnosed at least five years earlier. The methodological quality of the 10 selected studies, conducted between 1997 and 2004, was high according to a list of predefined criteria. Most studies reported that long-term survivors of breast cancer experienced good overall quality of life. However, almost all studies reported that breast cancer survivors experienced some specific problems (e.g., a thick and painful arm and problems with sexual functioning). The current medical condition, amount of social support and current income level were strong positive predictors of quality of life, and the use of adjuvant chemotherapy emerged as a negative predictor. More research on the specific medical and psychosocial needs of survivors is needed in order to be able to design appropriate intervention studies. If anything, this review shows that focusing on the long-term effects of breast cancer is important when evaluating the full extent of cancer treatment.
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              Pragmatic controlled clinical trials in primary care: the struggle between external and internal validity

              Marshall Godwin, Lucia Ruhland, Ian Casson … (2003)
              Background Controlled clinical trials of health care interventions are either explanatory or pragmatic. Explanatory trials test whether an intervention is efficacious; that is, whether it can have a beneficial effect in an ideal situation. Pragmatic trials measure effectiveness; they measure the degree of beneficial effect in real clinical practice. In pragmatic trials, a balance between external validity (generalizability of the results) and internal validity (reliability or accuracy of the results) needs to be achieved. The explanatory trial seeks to maximize the internal validity by assuring rigorous control of all variables other than the intervention. The pragmatic trial seeks to maximize external validity to ensure that the results can be generalized. However the danger of pragmatic trials is that internal validity may be overly compromised in the effort to ensure generalizability. We are conducting two pragmatic randomized controlled trials on interventions in the management of hypertension in primary care. We describe the design of the trials and the steps taken to deal with the competing demands of external and internal validity. Discussion External validity is maximized by having few exclusion criteria and by allowing flexibility in the interpretation of the intervention and in management decisions. Internal validity is maximized by decreasing contamination bias through cluster randomization, and decreasing observer and assessment bias, in these non-blinded trials, through baseline data collection prior to randomization, automating the outcomes assessment with 24 hour ambulatory blood pressure monitors, and blinding the data analysis. Summary Clinical trials conducted in community practices present investigators with difficult methodological choices related to maintaining a balance between internal validity (reliability of the results) and external validity (generalizability). The attempt to achieve methodological purity can result in clinically meaningless results, while attempting to achieve full generalizability can result in invalid and unreliable results. Achieving a creative tension between the two is crucial.
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                Author and article information

                Journal
                Journal ID (nlm-ta): Ann Oncol
                Journal ID (hwp): annonc
                Journal ID (publisher-id): annonc
                Title: Annals of Oncology
                Publisher: Oxford University Press
                ISSN (Print): 0923-7534
                ISSN (Electronic): 1569-8041
                Publication date (Print): April 2011
                Publication date (Electronic): 24 September 2010
                Publication date PMC-release: 24 September 2010
                Volume: 22
                Issue: 4
                Pages: 761-772
                Affiliations
                [1 ]Department of Medical Psychology and Neuropsychology, CoRPS—Center of Research on Psychology in Somatic Diseases, Tilburg University, Tilburg
                [2 ]Comprehensive Cancer Centre South (CCCS), Department of Research, Eindhoven Cancer Registry, Eindhoven, The Netherlands
                Author notes
                [* ] Correspondence to: Dr O. Husson, CoRPS—Center of Research on Psychology in Somatic Diseases, Department of Medical Psychology and Neuropsychology, Tilburg University, Warandelaan 2, PO Box 90153, 5000 LE Tilburg, the Netherlands. Tel: +31-13-4668920; Fax: +31-13-4662067; E-mail: O.Husson@ 123456uvt.nl , www.uvt.nl/corps
                Article
                DOI: 10.1093/annonc/mdq413
                PMC ID: 3065875
                PubMed ID: 20870912
                SO-VID: 5dac7a75-88ae-4a7b-8add-0fb06553dab3
                Copyright © © The Author 2010. Published by Oxford University Press on behalf of the European Society for Medical Oncology.
                License:

                This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License ( http://creativecommons.org/licenses/by-nc/2.5), which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                Date received : 16 December 2009
                Date revision received : 30 March 2010
                Date accepted : 09 July 2010
                Categories
                Subject: Reviews

                ScienceOpen disciplines: Oncology & Radiotherapy
                Keywords: information satisfaction,information needs,anxiety, depression, (health-related) quality of life,information provision
                Data availability:
                ScienceOpen disciplines: Oncology & Radiotherapy
                Keywords: information satisfaction, information needs, anxiety, depression, (health-related) quality of life, information provision

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