Format and readability of an enhanced invitation letter did not affect participation rates in a cancer registry-based study: a randomized controlled trial

Hall, Alix; Sanson‐Fisher, Rob; Lynagh, Marita; Threlfall, Timothy; DʼEste, Catherine

doi:10.1016/j.jclinepi.2012.07.016

Cited by 30 publications

(44 citation statements)

References 44 publications

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“…The yield we observed, however, is fairly consistent with other studies utilizing cancer registries for recruitment (62). The fact that cancer registries of ten have inaccurate or out-of-date contact information for a sizable proportion of registrants is a likely contributing factor to the low yields observed in studies using this type of recruitment approach.…”

Section: Discussionsupporting

confidence: 91%

Sun Protection Practices and Sun Exposure among Children with a Parental History of Melanoma

Glenn

Lin

Chang

et al. 2015

Cancer Epidemiology, Biomarkers &Amp; Prevention

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Background First-degree relatives of melanoma survivors have a substantially higher lifetime risk for melanoma than individuals with no family history. Exposure to ultraviolet radiation is the primary modifiable risk factor for the disease. Reducing UV exposure through sun protection may be particularly important for children with a parental history of melanoma. Nonetheless, limited prior research has investigated sun protection practices and sun exposure among these children. Methods The California Cancer Registry was used to identify melanoma survivors eligible to participate in a survey to assess their children's sun protection practices and sun exposure. The survey was administered by mail, telephone, or web to Latino and non-Latino white melanoma survivors with at least one child (0–17 years; N = 324). Results Sun exposure was high and the rate of sunburn was equivalent to or higher than estimates from average risk populations. Use of sun protection was suboptimal. Latino children were less likely to wear sunscreen and hats and more likely to wear sunglasses, although these differences disappeared in adjusted analyses. Increasing age of the child was associated with lower sun protection and higher risk for sunburn whereas higher objective risk for melanoma predicted improved sun protection and a higher risk for sunburns. Perception of high barriers to sun protection was the strongest modifiable correlate of sun protection. Conclusions Interventions to improve sun protection and reduce sun exposure and sunburns in high risk children are needed. Impact Intervening in high risk populations may help reduce the burden of melanoma in the U.S.

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Section: Discussionsupporting

confidence: 91%

Sun Protection Practices and Sun Exposure among Children with a Parental History of Melanoma

Glenn

Lin

Chang

et al. 2015

Cancer Epidemiology, Biomarkers &Amp; Prevention

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“…Of these 25 citations, 14 are related to cancer (6 to breast cancer [10-14, 16,17], 2 to ovarian cancer [18-19], 1 to hematological cancer [20], 1 to prostate cancer[13], 1 to cancer genetics [21], 1 to histiocytosis [22], 1 to familial adenomatous polyposis [23], and 1 to colorectal cancer [24]), 3 to diabetes mellitus [25-27], 1 to stroke [28], 1 to asthma [29], 1 to celiac disease [30] and 5 are disease neutral [9, 15, 31-33]. …”

Section: Resultsmentioning

confidence: 99%

Using registries to recruit subjects for clinical trials

Tan

Thomas

MacEachern

2015

Contemporary Clinical Trials

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Aim We studied the use of patient/disease registries to recruit potential subjects for prospective clinical trials - describing the number, types and major benefits of using this approach. Methods In December 2013, we conducted a focused database search in PubMed, EMBASE, and Web of Science for studies (English language only) that used registries to recruit subjects for clinical trials published in 2004-2013. Of the 233 unique citations identified, 21 used registries to recruit subjects - 10 papers and 11 abstracts. Pearling and search for subsequent full papers of the abstracts identified 4 more papers. Results Our analysis, based on these 25 citations, showed 14 are related to cancer, 3 to diabetes mellitus, 1 each to stroke, asthma, and celiac disease and 5 are disease neutral. Many types of registries (population-based cancer, quality improvement, disease-specific, web-based disease-neutral registries, local general practice registers, and national health database) are used to recruit subjects for clinical trials and uncover new knowledge. Overall, 16 registries are in the US, 4 in UK, 1 each in Canada, Spain, Australia and I in many countries. Registries can identify very large number of subjects for screening for eligibility for clinical trials, especially in very large trials, rare disease trials, and trials involving minority patients. Conclusions Registries can retrospectively identify very large numbers of potential subjects for screening for eligibility and enrollment in prospective clinical trials. This matching can lead to more timely recruitment and help solve a major problem in conducting clinical trials.

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“…In an effort to overcome this limitation, multiple efforts were made to increase the response rates of haematological cancer survivors approached for this study. Strategies included assessing the effectiveness of a tailored invitation letter to improve response rates to survivors recruited from Registry A [30], and the inclusion of several evidence-based strategies for increasing questionnaire response rates for survivors recruited from Registries B, C and D, such as the use of multiple reminders to non-responders and reducing the length of the survey sent to survivors [61]. In addition, non-participant and participant age at diagnosis and cancer type were statistically significantly different.…”

Section: Discussionmentioning

confidence: 99%

“…The first registry conducted a one-off cross-sectional survey. On behalf of the researchers, survivors were mailed a questionnaire package from this cancer registry [30]. …”

Section: Methodsmentioning

confidence: 99%

The Survivor Unmet Needs Survey (SUNS) for haematological cancer survivors: a cross-sectional study assessing the relevance and psychometric properties

Hall

DʼEste

Tzelepis

et al. 2014

BMC Health Serv Res

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BackgroundRelevant and psychometrically sound needs assessment tools are necessary for accurate assessment of haematological cancer survivors unmet needs. No previous study has developed nor psychometrically evaluated a comprehensive needs assessment tool for use with population-based samples of haematological cancer survivors. This study aimed to assess the validity and reliability of the Survivor Unmet Needs Survey (SUNS) with haematological cancer survivors.MethodsThe relevance, content and face validity of the SUNS to haematological cancer survivors was assessed using qualitative interviews. Psychometric evaluation was conducted using data collected from haematological cancer survivors, aged 18–80 years at recruitment and recruited from four Australian cancer registries. Construct, convergent and discriminant validity; internal reliability and floor and ceiling effects were assessed. A second survey was completed by a sub-sample of survivors recruited from two of the four registries to assess test-retest reliability.ResultsResults from 17 qualitative interviews confirmed the relevance, face and content validity of the original items of the SUNS for use with haematological cancer survivors. Overall, 1,957 eligible haematological cancer survivors were contacted by the cancer registries. Of these 1,280 were sent a survey, and 715 returned a survey (37% of eligible survivors contacted and 56% of survivors sent a survey). A total of 529 survivors completed all 89 items of the SUNS and were included in the exploratory factor analysis. Exploratory factor analysis supported the original five-factor structure of the SUNS. Evidence for convergent validity was established, with all five domains of the SUNS illustrating a moderate positive correlation with all three subscales of the Depression Anxiety and Stress Scale (DASS-21). All Cronbach’s alpha values were above 0.9 and all corrected item-total correlations were acceptable (>0.2). Criteria for discriminant validity was not met, with only 10 of the 15 (67%) a-priori hypotheses supported. Test-retest reliability was acceptable for 40 of the 89 items (45%) and for three of the five domains. Significant floor effects were evident for all five domains.ConclusionsThe SUNS demonstrates evidence for multiple features of validity and reliability as a measure of unmet needs for haematological cancer survivors. However, evidence supporting some psychometric properties was limited.

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Format and readability of an enhanced invitation letter did not affect participation rates in a cancer registry-based study: a randomized controlled trial

Cited by 30 publications

References 44 publications

Sun Protection Practices and Sun Exposure among Children with a Parental History of Melanoma

Sun Protection Practices and Sun Exposure among Children with a Parental History of Melanoma

Using registries to recruit subjects for clinical trials

The Survivor Unmet Needs Survey (SUNS) for haematological cancer survivors: a cross-sectional study assessing the relevance and psychometric properties

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