Users’ evaluation of Japan’s cancer information services: process, outcomes, satisfaction and independence

BackgroundCancer information service (CIS) programmes are becoming increasingly important because patients need to obtain appropriate information and take an active role in their treatment decisions. Programme evaluation is required to determine the level of satisfaction and quality of experiences of users. The purpose of this study is (1) to identify users’ evaluation of CIS programmes by both satisfaction and outcomes that reflect the quality of experience and impact of using the CIS, (2) to examine the related factors of these evaluation outcomes and (3) to analyse the differences of those relations between patients and families.MethodThe self-reported questionnaire was answered by 447 patients and 216 families of patients who used Cancer Information Support Centres (CISCs) at 16 designated cancer hospitals from January 2016 to April 2016. We developed 12 evaluation items, including satisfaction, experience and the impact of using CISC.ResultsRespondents evaluated the CISC highly, especially in terms of overall satisfaction, followed by the counselling process. Immediate access to CISC was the strongest factor affecting outcomes. Patients who wanted to consult about ‘disease or symptoms’ or ‘had no specific problem’ tended to provide high scores for some outcomes, but those who wanted to consult about a ‘financial problem’ or ‘discharge or care at home’ provided negative scores. These trends were also observed in families but to a more limited extent.ConclusionUsers’ evaluation of CISCs was sufficiently high in terms of overall satisfaction, showing reasonable scores in outcome levels. Immediate access was the strongest factor affecting outcomes and topics of consultation more directly affected evaluation by patients than by families. The distribution of the scores of the measures and related factors was reasonable. The 12-item measurement tool employed in this study seems to be useful for quality monitoring of the CIS.

Analisis Pengujian terhadap Model Aplikasi Sistem Pakar Diagnosis Penyakit Paru-Paru Berbasis Web

Data dari Indonesian Cancer Information & Support Center (CISC) menunjukkan kanker paru-paru merupakan kanker pembunuh nomor satu di Indonesia dengan total 14 persen dari kematian karena kanker. Angka kematiannya bahkan mencapai 88 persen. Penanganan yang dapat dilakukan adalah melakukan pemeriksaan sejak dini melalui sistem pakar. Tujuan dari penelitian ini adalah untuk merancang sebuah sistem pakar diagnosis penyakit paru-paru berbasis web yang dapat membantu masyarakat untuk melakukan konsultasi penyakit paru-paru tanpa harus datang langsung ke rumah sakit, puskesmas atau dokter. Dalam pembuatan model aplikasi sistem pakar menerapkan metode desktiptif dan tindakan (aksi). Sedangkan dalam melakukan perancangan sistem pakar tersebut, metode yang digunakan adalah metode pendekatan berorientasi objek dan metode pengembangan prototype. Hasil penelitian terdiri dari beberapa tahapan, yaitu (1) Analisis ke dalam model/rancangan/prototype aplikasi, (2) Pengujian Model/Prototype, and (3) Perbaikan Model/Rancangan/Prototype Sistem Pakar. Peneliti mengharapkan adanya sistem pakar ini akan mempermudah masyarakat untuk mendapatkan pelayanan informasi secara langsung mengenai penyakit paru-paru dan diagnosis penyakit paru-paru serta membantu dokter untuk melakukan pengawasan pengobatan terhadap pasien.

Explicating the health-related digital divide: A mediation mechanism between education level and online cancer information seeking frequency among Chinese adults

In China, highly educated adults seek online cancer information more frequently than less educated adults. This health-related digital divide may impede the less-educated from effectively preventing cancer. To explicate the divide, we introduce informational subjective norms (ISN) and information sufficiency threshold (IST) as two socio-psychological mediators between education level and online cancer information seeking (OCIS) frequency. ISN represents one's perceived social pressure about seeking cancer information, while IST manifests individual evaluation of the amount of information needed to prevent cancer. An online survey supported a serial mediation effect of ISN and IST. ISN and IST also independently mediated the relationship between education level and OCIS frequency. Besides, the mediation effect of ISN was stronger than that of IST. The findings suggest that increasing ISN among less educated Chinese adults could facilitate their OCIS and to narrow the health-related digital divide. These implications may also inform other developing countries.

Understanding the Pathway of Cancer Information Seeking: Cancer Information Services as a Supplement to Information from Other Sources

Cancer information services (CISs) can play an important role within the pathway of cancer information seeking, but so far, this role is not well understood. Callers (n = 6,255) who contacted the largest provider of cancer information in Germany participated in a survey in which they reported their information sources, information level, and needs leading to the call. Persons with prior information from a physician (n = 1,507) were compared to people with prior online information (n = 901) and people with prior information from both sources (n = 2,776). Nearly all callers (96.7%) stated prior sources, while physicians and the Internet were the most frequently reported sources. People, who only talked to a doctor before, are more likely to be a patient and in the disease stages during/after the first treatment or with recurrence than prior Internet users. The two groups do not differ in their prior information level but did differ in their information needs. CISs are an important supplement to other sources, while the information repertoire depends on patients’ stages during the cancer journey. Specific characteristics and needs of callers with different prior information sources help to individualize the service of CISs and similar providers.

Predictors of Population Awareness of Cancer Genetic Tests: Implications for Enhancing Equity in Engaging in Cancer Prevention and Precision Medicine

PURPOSE Racial and ethnic disparities in genetic awareness (GA) can diminish the impact of personalized cancer treatment and risk assessment. We assessed factors predictive of GA in a diverse population–based sample to inform awareness strategies and reduce disparities in genetic testing. METHODS A cross-sectional study was conducted from July 2019 to August 2019, with the survey e-mailed to 7,575 adult residents in southeastern Pennsylvania and New Jersey. Constructs from National Cancer Institute Health Information and National Trends Survey assessed cancer attitudes or beliefs, health literacy, and numeracy. Characteristics were summarized with mean ± standard deviation for numeric variables and frequency counts and percentages for categorical variables. Comparison of factors by race or ethnicity (non-Hispanic White and non-Hispanic Black) and sex was conducted by t-tests, chi-square, or Fisher's exact tests. Multivariate logistic regression models were conducted to identify factors independently predictive of GA. RESULTS Of 1,557 respondents, data from 940 respondents (the mean age was 45 ± 16.2 years, 35.5% males, and 23% non-Hispanic Blacks) were analyzed. Factors associated with higher GA included female gender ( P < .001), non-Hispanic White ( P < .001), college education ( P < .001), middle-higher income ( P < .001), stronger belief in genetic basis of cancer ( P < .001), lower cancer fatalism ( P = .004), motivation for cancer information ( P < .001), and higher numeracy ( P = .002). On multivariate analysis, college education (odds ratio [OR] 1.79; 95% CI, 1.22 to 2.63), higher motivation for cancer information (OR 1.56; 95% CI, 1.17 to 2.09), stronger belief in genetics of cancer (OR 2.21; 95% CI, 1.48 to 3.30), and higher medical literacy (OR 2.21; 95% CI, 1.34 to 3.65) predicted greater GA. CONCLUSION This population-based study conducted in the precision medicine era identified novel modifiable factors, importantly perceptions of cancer genetics and medical literacy, as predictive of GA, which informs strategies to promote equitable engagement in genetically based cancer care.

Mutaciones genéticas asociadas a cáncer de mama hereditario en mujeres nicaragüenses

Introducción: La etiología del cáncer de mama es multifactorial, sin embargo, se ha evidenciado que la mayoría son esporádicos y del 5 al 10% de origen genético. Los genes conocidos hasta la fecha y asociados con una predisposición hereditaria al cáncer de mama se han clasificado según su función en genes de alta, moderada y baja penetrancia. Objetivo: Determinar mutaciones genéticas asociadas a cáncer de mama hereditario en mujeres nicaragüenses. Materiales y método: 39 mujeres con diagnóstico histopatológico de cáncer de mama fueron reclutadas para participar en el estudio, previo consentimiento informado. Se tomó 5ml de sangre periférica de cada una de las pacientes para la extracción del ADN, luego se realizó el test genético a los genes BRCA1, BRCA2, Tp53, PALB2, CDH1, PTEN y CHEK2, determinando su significado clínico comparando las secuencias con las bases de datos del Breast Cancer Information Core (BIC) y ClinVar. Resultados: El 10.2% (4/39) de las pacientes estudiadas son portadoras de una mutación patogénica en BRCA2 (5%), Tp53 y PALB2 (2.5% respectivamente), asociadas a cáncer de mama de origen hereditario. También se identificaron variaciones de significado clínico benigno, inciertas, variantes que aún no han sido reportadas en las bases de datos y otras con conflicto de patogenicidad. Conclusión: Es necesario e importante incluir el diagnóstico molecular en pacientes nicaragüenses en riesgo a desarrollar cáncer de mama de origen hereditario, para su propio bienestar y el de sus familiares, logrando un diagnóstico precoz, mejorar la terapia y el seguimiento. Por lo tanto, recomendamos se integre el cribado genético para las mujeres nicaragüenses en riesgo a desarrollar esta enfermedad y en aquellas que ya la padecen.