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Informational needs during active surveillance for prostate cancer: A qualitative study.

ABSTRACT: OBJECTIVE:To understand the informational needs during active surveillance (AS) for prostate cancer from the perspectives of patients and providers. METHODS:We conducted seven focus groups with 37 AS patients in two urban clinical settings, and 24 semi-structured interviews with a national sample of providers. Transcripts were analyzed using applied thematic analysis, and themes were organized using descriptive matrix analyses. RESULTS:We identified six themes related to informational needs during AS: 1) more information on prostate cancer (biopsy features, prognosis), 2) more information on active surveillance (difference from watchful waiting, testing protocol), 3) more information on alternative management options (complementary medicine, lifestyle modification), 4) greater variety of resources (multiple formats, targeting different audiences), 5) more social support and interaction, and 6) verified integrity of information (trusted, multidisciplinary and secure). CONCLUSIONS:Patients and providers described numerous drawbacks to existing prostate cancer resources and a variety of unmet needs including information on prognosis, AS testing protocols, and lifestyle modification. They also expressed a need for different types of resources, including interaction and unbiased information. PRACTICAL IMPLICATIONS:These results are useful to inform the design of future resources for men undergoing AS.

SUBMITTER: Loeb S

PROVIDER: S-EPMC5808852 | biostudies-literature | 2018 Feb

REPOSITORIES: biostudies-literature

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Informational needs during active surveillance for prostate cancer: A qualitative study.

Loeb Stacy S Curnyn Caitlin C Fagerlin Angela A Braithwaite R Scott RS Schwartz Mark D MD Lepor Herbert H Carter H Ballentine HB Ciprut Shannon S Sedlander Erica E

Patient education and counseling 20170901 2

<h4>Objective</h4>To understand the informational needs during active surveillance (AS) for prostate cancer from the perspectives of patients and providers.<h4>Methods</h4>We conducted seven focus groups with 37 AS patients in two urban clinical settings, and 24 semi-structured interviews with a national sample of providers. Transcripts were analyzed using applied thematic analysis, and themes were organized using descriptive matrix analyses.<h4>Results</h4>We identified six themes related to in ...[more]

PMID: 28886974

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Project description:IntroductionOne in five men is likely to receive a diagnosis of prostate cancer (PCa) by the age of 85 years. Men diagnosed with low-risk PCa may be eligible for active surveillance (AS) to monitor their cancer to ensure that any changes are discovered and responded to in a timely way. Communication of risk in this context is more complicated than determining a numerical probability of risk, as patients wish to understand the implications of risk on their lives in concrete terms. Our study will examine how risk for PCa is perceived, experienced and communicated by patients using AS with their health professionals, and the implications for treatment and care.Methods and analysisThis is a proof of concept study, testing out a multimethod, qualitative approach to data collection in the context of PCa for the first time in Australia. It is being conducted from November 2016 to December 2017 in an Australian university hospital urology clinic. Participants are 10 men with a diagnosis of localised PCa, who are using an AS protocol, and 5 health professionals who work with this patient group (eg, urologists and Pca nurses). Data will be collected using observations of patient consultations with health professionals, patient questionnaires and interviews, and interviews with healthcare professionals. Analysis will be conducted in two stages. First, observational data from consultations will be analysed thematically to encapsulate various dimensions of risk classification and consultation dialogue. Second, interview data will be coded to derive meaning in text and analysed thematically. Overarching themes will represent patient and health professional perspectives of risk communication.Ethics and disseminationEthical approval for the study has been granted by Macquarie University Human Research Ethics Committee, approval 5201600638. Knowledge translation will be achieved through publications, reports and conference presentations to patients, families, clinicians and researchers.

Project description:PURPOSE:While major prostate cancer active surveillance programs recommend repeat testing such as prostate specific antigen and prostate biopsy, to our knowledge compliance with such testing is unknown. We determined whether men in the community receive the same intensity of active surveillance testing as in prospective active surveillance protocols. MATERIALS AND METHODS:We performed a retrospective cohort study of men 66 years old or older in the SEER (Surveillance, Epidemiology and End Results)-Medicare database. These men were diagnosed with prostate cancer from 2001 to 2009, did not receive curative therapy in the year after diagnosis and underwent 1 or more post-diagnosis prostate biopsies. We used multivariable adjusted Poisson regression to determine the association of the frequency of active surveillance testing with patient demographics and clinical features. In 1,349 men with 5 years of followup we determined the proportion who underwent testing as intense as that recommended by the Sunnybrook Health Sciences Centre and PRIAS (Prostate Cancer Research International Active Surveillance) programs, including 14 or more PSA tests and 2 or more biopsies, and The Johns Hopkins program, including 10 or more prostate specific antigen tests and 4 or more biopsies. RESULTS:Among 5,192 patients undergoing active surveillance greater than 80% had 1 or more prostate specific antigen tests per year but fewer than 13% underwent biopsy beyond the first 2 years. Magnetic resonance imaging was rarely done during the study period. On multivariable analysis recent diagnosis and higher income were associated with a higher frequency of surveillance biopsy while older age and greater comorbidity were associated with fewer biopsies. African American men underwent fewer prostate specific antigen tests but a similar number of biopsies. During 5 years of active surveillance only 11.1% and 5.0% of patients met the testing standards of the Sunnybrook/PRIAS and The Johns Hopkins programs, respectively. CONCLUSIONS:In the community few elderly men receive the intensity of active surveillance testing recommended in major prospective active surveillance programs.

Project description:Many men diagnosed with localized prostate cancer can postpone definitive treatment without raising their risk of metastasis or death from disease. Active surveillance (AS) is a method of monitoring select men, with the option of switching to active treatment upon signs of progression, thereby avoiding the well-known side-effects of surgery and radiotherapy. This review analyzes the data from long-running AS cohorts to determine the safety and efficacy of AS. We conducted a narrative review of recently published data, including 14 articles from 13 AS cohorts. The cohorts used varying inclusion criteria, with reported differences in clinical T stage and Gleason Score (Grade Group), among other features. Some studies (n=5) limited their cohorts to low-risk patients, while others (n=8) also included intermediate-risk patients. The heterogeneity of the cohorts produced mixed results, with the risk of prostate cancer metastasis ranging from 0.1-1.0% at 10 years and the risk of prostate cancer mortality ranging from 0-1.9% at 10 years. However, the majority of studies reported risks of less than 0.5% at 10 years for both metastasis and death. For most cohorts, half of men remained untreated for 5-10 years, with estimates ranging from 37% receiving active treatment in the Toronto cohort to 73% in the Prostate Cancer Research International AS (PRIAS) study. Current data do not support the use of negative magnetic resonance imaging (MRI) to avoid scheduled biopsy. Taken together, the data collected from these AS cohorts suggests that AS is a safe approach for men with low-grade prostate cancer and some men with intermediate risk disease. AS should be more broadly implemented for eligible patients to avoid the decreases in quality of life from undergoing active treatment. Studies expanding the inclusion criteria and further defining a subset of men with favorable intermediate-risk prostate cancer who might safely benefit from AS are needed to assess the long-term outcomes of using AS in intermediate-risk groups.

Project description:BackgroundThe routine clinical use of serum prostatic specific antigen (PSA) testing has allowed earlier detection of low-grade prostate cancer (PCa) with more favourable characteristics, leading to increased acceptance of management by active surveillance (AS). AS aims to avoid over treatment in men with low and intermediate-risk PCa and multiple governing bodies have described several AS protocols. This study provides a descriptive profile of the Guy's and St Thomas NHS Foundation Trust (GSTT) AS cohort as a platform for future research in AS pathways in PCa.MethodsDemographic and baseline characteristics were retrospectively collected in a database for patients at the GSTT AS clinic with prospective collection of follow-up data from 2012. Seven hundred eighty-eight men being monitored at GSTT with histologically confirmed intermediate-risk PCa, at least 1 follow-up appointment and diagnostic characteristics consistent with AS criteria were included in the profile. Descriptive statistics, Kaplan-Meier survival curves and multivariable Cox proportion hazards regression models were used to characterize the cohort.DiscussionA relatively large proportion of the cohort includes men of African/Afro-Caribbean descent (22%). More frequent use of magnetic resonance imaging and trans-perineal biopsies at diagnosis was observed among patients diagnosed after 2012. Those who underwent trans-rectal ultrasound diagnostic biopsy received their first surveillance biopsy 20 months earlier than those who underwent trans-perineal diagnostic biopsy. At 3 years, 76.1% men remained treatment free. Predictors of treatment progression included Gleason score 3 + 4 (Hazard ratio (HR): 2.41, 95% Confidence interval (CI): 1.79-3.26) and more than 2 positive cores taken at biopsy (HR: 2.65, CI: 1.94-3.62). A decreased risk of progressing to treatment was seen among men diagnosed after 2012 (HR: 0.72, CI: 0.53-0.98).ConclusionAn organised biopsy surveillance approach, via two different AS pathways according to the patient's diagnostic method, can be seen within the GSTT cohort. Risk of patients progressing to treatment has decreased in the period since 2012 compared with the prior period with more than half of the cohort remaining treatment free at 5 years, highlighting that the fundamental aims of AS at GSTT are being met. Thus, this cohort is a good resource to investigate the AS treatment pathway.

Project description:BackgroundThe effects of brain injury, structural damage, or the physiological disruption of brain function last far beyond initial clinical treatment. Self-tracking and management technologies have the potential to help individuals experiencing brain injury in their personal recovery-helping them to function at their best despite ongoing symptoms of illness. However, current self-tracking technologies may be unsuited for measuring the interconnected, nonlinear ways in which brain injury manifests.ObjectiveThis study aimed to investigate (1) the current informational practices and sensemaking processes used by postacute brain injury patients during personal recovery and (2) the potential role of quality-of-life instruments in improving patient awareness of brain injury recovery, advocacy, and involvement in care used outside the clinical context. Our objective was to explore the means of improving awareness through reflection that leads to compensatory strategies by anticipating or recognizing the occurrence of a problem caused by impairment.MethodsWe conducted a qualitative study and used essentialist or realist thematic analysis to analyze the data collected through semistructured interviews and questionnaires, 2 weeks of structured data collection using brain injury-specific health-related quality of life instrument, quality of life after brain injury (QoLIBRI), and final interviews.ResultsInformational practices of people with brain injury involve data collection, data synthesis, and obtaining and applying the insights to their lifestyles. Participants collected data through structured tools such as spreadsheets and wearable devices but switched to unstructured tools such as journals and blogs as changes in overall progress became more qualitative in nature. Although data collection helped participants summarize their progress better, the lack of conceptual understanding made it challenging to know what to monitor or communicate with clinicians. QoLIBRI served as an education tool in this scenario but was inadequate in facilitating reflection and sensemaking.ConclusionsIndividuals with postacute brain injury found the lack of conceptual understanding of recovery and tools for making sense of their health data as major impediments for tracking and being aware of their personal recovery. There is an urgent need for a better framework for recovery and a process model for choosing patient-generated health data tools that focus on the holistic nature of recovery and improve the understanding of brain injury for all stakeholders involved throughout recovery.

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Informational needs during active surveillance for prostate cancer: A qualitative study.

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Informational needs during active surveillance for prostate cancer: A qualitative study.

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