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

Loeb, Stacy; Curnyn, Caitlin; Fagerlin, Angela; Braithwaite, R. Scott; Schwartz, Mark D.; Lepor, Herbert; Carter, H. Ballentine; Ciprut, Shannon; Sedlander, Erica

doi:10.1016/j.pec.2017.08.022

Cited by 18 publications

(40 citation statements)

References 20 publications

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“…Study characteristics can be found in Table . Three studies were from the United States, two from Canada, and one each from the United Kingdom, Sweden, and Australia. Sample sizes of AS patients in cross‐sectional studies ranged from three to 431 (M = 169, SD = 229.6) and in qualitative studies ranged from four to 37 (M = 20.8, SD = 11.2).…”

Section: Resultsmentioning

confidence: 99%

“…Information on PCa, signs of progression, future treatment options, and adjuvant treatments (such as diet and exercise) were reported as inadequately provided by the treating physicians and/or unavailable to patients. For instance, one man in Loeb et al's study explained he wanted to “know what progresses the cancer” as he currently felt “ignorant about the whole thing.” Several participants in the qualitative studies also reported that information regarding AS was too limited. Loeb et al noted men often needed more information regarding the follow‐up protocol, such as the ideal frequency and reason for performing tests.…”

Section: Resultsmentioning

confidence: 99%

“…For instance, one man in Loeb et al's study explained he wanted to “know what progresses the cancer” as he currently felt “ignorant about the whole thing.” Several participants in the qualitative studies also reported that information regarding AS was too limited. Loeb et al noted men often needed more information regarding the follow‐up protocol, such as the ideal frequency and reason for performing tests. Mróz et al suspected several men in their study had utilised the interviews to get information on AS.…”

Section: Resultsmentioning

confidence: 99%

“…Participants in four qualitative studies reported that information on PCa and AS was contradictory, confusing, overwhelming, and inconsistent. Those in Loeb et al's study were often confused by their prognosis and the purpose/results of tests. One man stated; “there's a lot of jargon, and it's putting all the pieces together.…”

Section: Resultsmentioning

confidence: 99%

“…All I remember is that it exists and higher is bad.” In Mróz et al's study, lack of specificity regarding their prognosis resulted in confusion and sometimes left men wondering if they actually had cancer. Confusion was also reported by patients on the difference between AS and watchful waiting. Both the researchers and participants attributed this confusion to the inconsistency of information, especially those from differing sources.…”

Section: Resultsmentioning

confidence: 99%

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A systematic review of the unmet supportive care needs of men on active surveillance for prostate cancer

et al. 2019

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Objective Understanding the unmet supportive care needs of men on active surveillance for prostate cancer may enable researchers and health professionals to better support men and prevent discontinuation when there is no evidence of disease progression. This review aimed to identify the specific unmet supportive care needs of men on active surveillance. Methods A systematic review following PRISMA guidelines was conducted. Databases (Pubmed, Embase, PsycINFO, and CINAHL) were searched to identify qualitative and/or quantitative studies that reported unmet needs specific to men on active surveillance. Quality appraisals were conducted before results were narratively synthesised. Results Of the 3613 unique records identified, only eight articles were eligible (five qualitative and three cross‐sectional studies). Unmet Informational, Emotional/Psychological, Social, and “Other” needs were identified. Only three studies had a primary aim of investigating unmet supportive care needs. Small active surveillance samples, use of nonvalidated measures, and minimal reporting of author reflexivity in qualitative studies were the main quality issues identified. Conclusions The unmet needs of men on active surveillance is an underresearched area. Preliminary evidence suggests the information available and provided to men during active surveillance is perceived as inadequate and inconsistent. Men may also be experiencing unmet psychological/emotional, social, and other needs; however, further representative, high‐quality research is required to understand the magnitude of this issue. Reporting results specific to treatment type and utilising relevant theories/models (such as the social ecological model [SEM]) is recommended to ensure factors that may facilitate unmet needs are appropriately considered and reported.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

See 3 more Smart Citations

A systematic review of the unmet supportive care needs of men on active surveillance for prostate cancer

et al. 2019

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Patient experiences with tissue‐based genomic testing during active surveillance for prostate cancer

Leapman,

Sutherland,

Gross

et al. 2023

BJUI Compass

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BackgroundTissue‐based gene expression (genomic) tests provide estimates of prostate cancer aggressiveness and are increasingly used for patients considering or engaged in active surveillance. However, little is known about patient experiences with genomic testing and its role in their decision‐making.MethodsWe performed a qualitative study consisting of in‐depth, semi‐structured interviews of patients with low‐ or favourable‐intermediate‐risk prostate cancer managed with active surveillance. We purposively sampled to include patients who received biopsy‐based genomic testing as part of clinical care. The interview guide focused on experiences with genomic testing during patients' decision‐making for prostate cancer management and understanding of genomic test results. We continued interviews until thematic saturation was reached, iteratively created a code key and used conventional content analysis to analyse data.ResultsParticipants' (n = 20) mean age was 68 years (range 51–79). At initial biopsy, 17 (85%) had a Gleason grade group 1, and 3 (15%) had a grade group 2 prostate cancer. The decision to undergo genomic testing was driven by both participants and physicians' recommendations; however, some participants were unaware that testing had occurred. Overall, participants understood the role of genomic testing in estimating their prostate cancer risk, and the test results increased their confidence in the decision for active surveillance. Participants had some misconceptions about the difference between tissue‐based gene expression tests and germline genetic tests and commonly believed that tissue‐based tests measured hereditary cancer risk. While some participants expressed satisfaction with their physicians' explanations, others felt that communication was limited and lacked sufficient detail.ConclusionPatients interact with and are influenced by the results of biopsy‐based genomic testing during active surveillance for prostate cancer, despite gaps in understanding about test results. Our findings indicate areas for improvement in patient counselling in order to increase patient knowledge and comfort with genomic testing.

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‘It Just Makes Sense to Me’: A qualitative study exploring patient decision‐making and experiences with prostate MRI during active surveillance for prostate cancer

Sutherland,

Gross,

et al. 2024

BJUI Compass

Self Cite

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IntroductionAlthough prostate magnetic resonance imaging (MRI) is commonly used in the diagnosis, staging and active surveillance of prostate cancer, little is known about patient perspectives on MRI.MethodsWe performed a qualitative study consisting of in‐depth, semi‐structured interviews of patients with low‐ and intermediate‐risk prostate cancer managed with active surveillance. Interviews focused on experiences with and knowledge of prostate MRI and MRI‐ultrasound fusion biopsy during active surveillance. We purposively sampled patients who received prostate MRI as part of their clinical care, conducted interviews until reaching thematic saturation and performed conventional content analysis to analyse data.ResultsTwenty patients aged 51–79 years (mean = 68 years) participated in the study. At diagnosis, 17 (85%) had a Gleason grade group 1, and three (15%) had a grade group 2 tumour. Overall, participants viewed prostate MRI as a valuable tool that accurately localizes and monitors prostate cancer over time, and they considered prostate MRI central to active surveillance monitoring. We identified five thematic categories related to MRI use: (1) the experiential aspects of undergoing an MRI scan; (2) the experience of visualizing one's own prostate and prostate cancer; (3) adequacy of provider explanations of MRI results; (4) confidence in prostate MRI in decision‐making; and (5) the role of prostate MRI in longitudinal follow‐up, including an interest in using MRI to modify the timing of, or replace, prostate biopsy.ConclusionPatients value prostate MRI as a tool that enhances their confidence in the initial diagnosis and monitoring of prostate cancer. This work can inform future studies to optimize patient experience, education and counselling during active surveillance for prostate cancer.

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

Abstract: These results are useful to inform the design of future resources for men undergoing AS.

Cited by 18 publications

References 20 publications

A systematic review of the unmet supportive care needs of men on active surveillance for prostate cancer

A systematic review of the unmet supportive care needs of men on active surveillance for prostate cancer

Patient experiences with tissue‐based genomic testing during active surveillance for prostate cancer

‘It Just Makes Sense to Me’: A qualitative study exploring patient decision‐making and experiences with prostate MRI during active surveillance for prostate cancer

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