Melanoma survivors are dissatisfied with perceived information about their diagnosis, treatment and follow-up care

Husson, Olga; Holterhues, Cynthia; Mols, Floortje; Nijsten, Tamar; Poll‐Franse, Lonneke V. van de

doi:10.1111/j.1365-2133.2010.09895.x

Cited by 26 publications

(26 citation statements)

References 10 publications

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“…The observed association between younger age and more perceived information provision is consistent with previous research [13,27]. Studies have shown that older patients tend to ask fewer questions during their visit with their physician, and might therefore receive less information [28,29].…”

Section: Discussionsupporting

confidence: 88%

“…However, the information needs of cancer patients differ by gender, age, cultural background, educational level, cancer type, stage of disease (at diagnosis, treatment and follow-up), and coping style [11,12]. Understanding factors associated with information provision might help health care providers to provide more patient-centered information by giving adequate information to those who need it, at the right time [13]. Results: Seventy-seven percent responded (n = 742).…”

Section: Introductionmentioning

confidence: 99%

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Endometrial cancer survivors are unsatisfied with received information about diagnosis, treatment and follow-up: A study from the population-based PROFILES registry

Nicolaije

Husson

Ezendam

et al. 2012

Patient Education and Counseling

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General rightsCopyright and moral rights for the publications made accessible in the public portal are retained by the authors and/or other copyright owners and it is a condition of accessing publications that users recognise and abide by the legal requirements associated with these rights.-Users may download and print one copy of any publication from the public portal for the purpose of private study or research -You may not further distribute the material or use it for any profit-making activity or commercial gain -You may freely distribute the URL identifying the publication in the public portal Take down policyIf you believe that this document breaches copyright, please contact us providing details, and we will remove access to the work immediately and investigate your claim. IntroductionEndometrial cancer is the most frequent gynecological cancer in industrialized countries, with an incidence of 15-25 per 100,000 women per year [1,2]. An ageing population with more diagnoses of endometrial cancer, increased risk factors, such as obesity, diabetes, and a lower parity, and more aggressive treatments in advanced disease all have resulted in increasing numbers of endometrial cancer survivors. In 2005, there were about 17,000 endometrial cancer survivors in The Netherlands, and this number is expected to increase to 25,000 in 2015 [3].Patient information is an essential factor in the support for cancer survivors across the whole cancer trajectory. Appropriate information given to cancer survivors about their diagnosis, treatment, possible long-term and late effects and referral services can result in better informed decision making, lower levels of distress, and improved satisfaction with care and sense of control [4][5][6][7]. Cancer survivors who are satisfied with the information they received have a better health related quality of life, and lower levels of depression and anxiety [8]. Studies suggest that most cancer patients want as much information as possible [7,9,10]. However, the information needs of cancer patients differ by gender, age, cultural background, educational level, cancer type, stage of disease (at diagnosis, treatment and follow-up), and coping style [11,12]. Understanding factors associated with information provision might help health care providers to provide more patient-centered information by giving adequate information to those who need it, at the right time [13]. Results: Seventy-seven percent responded (n = 742). Most patients indicated receiving quite a bit information about their disease and medical tests. However, most patients were not (54%) or a little (24%) informed about the cause of their disease, and possible side effects (36%; 27%). Especially information about additional help, rehabilitation, psychological assistance, and expected results on social and sexual life was lacking. Five percent was not or a little (36%) satisfied. Four percent found the information not or a little (35%) helpful. Fifteen percent preferred more information. Younger age, more recent diagnosis, ...

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Section: Discussionsupporting

confidence: 88%

Section: Introductionmentioning

confidence: 99%

Endometrial cancer survivors are unsatisfied with received information about diagnosis, treatment and follow-up: A study from the population-based PROFILES registry

Nicolaije

Husson

Ezendam

et al. 2012

Patient Education and Counseling

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“…Optimal care may be compromised by PCPs’ and oncologists’ conflicting perspectives on their roles in survivorship care; these conflicting perspectives may result in the duplication or omission of services [6]. Survivors often report feeling poorly educated regarding psychological, social, and sexual health issues [26] and their risk for recurrence [18], and they report being dissatisfied with care following cancer treatment [14]. …”

Section: Introductionmentioning

confidence: 99%

Determinants of Survivorship Care Plan Use in US Cancer Programs

et al. 2014

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Background Cancer programs are increasingly required to use survivorship care plans (SCPs). Compliance with SCP use requirements will be evaluated at the cancer program level. Cancer program-level determinants of SCP use may suggest strategies for compliance. The objective of this study was to describe SCP use and identify its cancer program-level determinants. Methods We surveyed employees knowledgeable about survivorship practices in cancer programs throughout the United States with a wide range of annual incident cancers, program types, and cancer care quality improvement organization memberships (81/100 response rate). We used descriptive statistics to describe SCP use and bivariate statistics to identify its cancer program-level determinants. Results Most respondents (56%) reported that SCPs were not used. In programs reporting use, SCP use is restricted primarily to breast (82%) and colorectal (55%) cancer survivors, and few providers use SCPs. When developed, SCPs seldom reach survivors and their primary care providers. Most respondents (78%) reported beginning to use SCPs because of requirements. Frequently cited barriers included insufficient resources (76%), perceived difficulty using SCPs (29%), and lack of advocacy for SCP use from influential people (24%). SCP use was positively associated with academic program type (p=.009) and membership in the National Cancer Institute’s Community Cancer Centers Program (p=.009) and negatively associated with freestanding program type (p=.02). Conclusion SCP use in United States cancer programs is highly inconsistent. Many cancer programs plan to implement SCPs to comply with SCP use requirements. Support specifically intended to facilitate SCP use may be more effective than non-specific resources.

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“…Stage IA marks the exception, since no elevated recurrence rates have been observed even within the first three years after diagnosis. Nevertheless, these patients may benefit from follow-up appointments within the first 3 years after surgery, as an increased percentage of secondary melanomas is diagnosed during this period [300], patients have an increased need for information and consultation, and postoperative follow-up is facilitated [238,616]. Intensified follow-up includes trimonthly appointment intervals.…”

Section: Explanation Of Recommendationsmentioning

confidence: 99%