A Qualitative Study of Men’s Experiences Using Navigate: A Localized Prostate Cancer Treatment Decision Aid
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PROVIDER: S-EPMC10501076 | biostudies-literature | 2023 Jan
REPOSITORIES: biostudies-literature
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Project description:PurposeTo investigate men's experiences of receiving external-beam radiotherapy (EBRT) with neoadjuvant Androgen Deprivation Therapy (ADT) for localized prostate cancer (LPCa) in the ProtecT trial.MethodsA longitudinal qualitative interview study was embedded in the ProtecT RCT. Sixteen men with clinically LPCa who underwent EBRT in ProtecT were purposively sampled to include a range of socio-demographic and clinical characteristics. They participated in serial in-depth qualitative interviews for up to 8 years post-treatment, exploring experiences of treatment and its side effects over time.ResultsMen experienced bowel, sexual, and urinary side effects, mostly in the short term but some persisted and were bothersome. Most men downplayed the impacts, voicing expectations of age-related decline, and normalizing these changes. There was some reticence to seek help, with men prioritizing their relationships and overall health and well-being over returning to pretreatment levels of function. Some unmet needs with regard to information about treatment schedules and side effects were reported, particularly among men with continuing functional symptoms.ConclusionsThese findings reinforce the importance of providing universal clear, concise, and timely information and supportive resources in the short term, and more targeted and detailed information and care in the longer term to maintain and improve treatment experiences for men undergoing EBRT.
| S-EPMC7870600 | biostudies-literature
Project description:Optimal treatment for localized prostate cancer (LPC) is controversial. We assessed the effects of personality, specialists seen, and involvement of spouse, family, or friends on treatment decision/decision-making qualities.We surveyed a population-based sample of men ≤ 75 years with newly diagnosed LPC about treatment choice, reasons for the choice, decision-making difficulty, satisfaction, and regret.Of 160 men (71 black, 89 white), with a mean age of 61 (±7.3) years, 59% chose surgery, 31% chose radiation, and 10% chose active surveillance (AS)/watchful waiting (WW). Adjusting for age, race, comorbidity, tumor risk level, and treatment status, men who consulted friends during decision-making were more likely to choose curative treatment (radiation or surgery) than WW/AS (OR = 11.1, p < 0.01; 8.7, p < 0.01). Men who saw a radiation oncologist in addition to a urologist were more likely to choose radiation than surgery (OR = 6.0, p = 0.04). Men who consulted family or friends (OR = 2.6, p < 0.01; 3.7, p < 0.01) experienced greater decision-making difficulty. No personality traits (pessimism, optimism, or faith) were associated with treatment choice/decision-making quality measures.In addition to specialist seen, consulting friends increased men's likelihood of choosing curative treatment. Consulting family or friends increased decision-making difficulty.
| S-EPMC5529637 | biostudies-other
Project description:BackgroundThe American Urological Association White Paper on Implementation of Shared Decision Making (SDM) into Urological Practice suggested SDM represents the state of the art in counseling for patients who are faced with difficult or uncertain medical decisions. The Michigan Urological Surgery Improvement Collaborative (MUSIC) implemented a decision aid, Personal Patient Profile-Prostate (P3P), in 2018 to help newly diagnosed prostate cancer patients make shared decisions with their clinicians. We conducted a qualitative study to assess statewide implementation of P3P throughout MUSIC.MethodsWe recruited urologists and staff from 17 MUSIC practices (8 implementation and 9 comparator practices) to understand how practices engaged patients on treatment discussions and to assess facilitators and barriers to implementing P3P. Interview guides were developed based on the Tailored Interventions for Chronic Disease (TICD) Framework. Interviews were transcribed for analysis and coded independently by two investigators in NVivo, PRO 12. Additionally, quantitative program data were integrated into thematic analyses.ResultsWe interviewed 15 urologists and 11 staff from 16 practices. Thematic analysis of interview transcripts indicated three key themes including the following: (i) P3P is compatible as a SDM tool as over 80% of implementation urologists asked patients to complete the P3P questionnaire routinely and used P3P reports during treatment discussions; (ii) patient receptivity was demonstrated by 370 (50%) of newly diagnosed patients (n = 737) from 8 practices enrolled in P3P with 78% completion rate, which accounts for 39% of all newly diagnosed patients in these practices; and (iii) urologists' attitudes towards SDM varied. Over a third of urologists stated they did not rely on a decision aid. Comparator practices indicated habit, inertia, or concerns about clinic flow as reasons for not adopting P3P and some were unconvinced a decision aid is needed in their practice.ConclusionUrologists and staff affiliated with MUSIC implementation sites indicated that P3P focuses the treatment discussion on items that are important to patients. Experiences of implementation practices indicate that once initiated, there were no negative effects on clinic flow and urologists indicated P3P saves time during patient counseling, as patients were better prepared for focused discussions. Lack of awareness, personal habits, and inertia are reasons for not implementing P3P among the comparator practices.
| S-EPMC7936475 | biostudies-literature
Project description:PurposeDecision aids have been found to improve patients' knowledge of treatments and decrease decisional regrets. Despite these benefits, there is not widespread use of decision aids for newly diagnosed prostate cancer (PCa). This analysis investigates factors that impact men's choice to use a decision aid for newly diagnosed prostate cancer.Materials and methodsThis is a retrospective analysis of a PCa registry from the Michigan Urological Surgery Improvement Collaborative (MUSIC). We included data from men with newly diagnosed, clinically localized PCa seen from 2018-21 at practices offering a PCa decision aid (Personal Patient Profile-Prostate; P3P). The primary outcome was men's registration to use P3P. We fit a multilevel logistic regression model with patient-level factors and included urologist specific random intercepts. We estimated the intra-class correlation (ICC) and predicted the probability of P3P registration among urologists.ResultsA total of 2629 men were seen at practices that participated in P3P and 1174 (45%) registered to use P3P. Forty-one percent of the total variance of P3P registration was attributed to clustering of men under a specific urologist's care. In contrast, only 1.5% of the variance of P3P registration was explained by patient factors. Our model did not include data on socioeconomic, literacy or psychosocial factors, which limits the interpretation of the results.ConclusionsThese results suggest that urologists' effect far outweighs patient factors in a man's decision to enroll in P3P. Strategies that encourage providers to increase decision aid adoption in their practices are warranted.
| S-EPMC9205471 | biostudies-literature
Project description:PurposeWhile the existing knowledge base on the impact of prostate cancer (PC) and its treatment on sexuality and intimacy has been generated from Western populations, there is a lack of such evidence in the Asian context. This study aimed to explore men's experiences of sex and intimacy after PC treatment in China.MethodsThis study adopted an interpretive descriptive design. Using purposive sampling, 13 PC patients were selected from a urology outpatient unit of a hospital in South China and proceeded with individual semi-structured telephone interviews. Each interview was transcribed verbatim and analyzed using constant comparison analysis.ResultsFour themes emerged from the interview data, including (a) encountering altered sexuality, (b) communication and sexual adjustments, (c) maintenance of quality intimate relationship, and (d) lack of sexual health support.ConclusionsThe findings revealed that PC treatment significantly impaired patients' sexual functions, and their sexual health needs were mainly unmet by healthcare providers. There is a great need to design culturally relevant interventions to improve sexual health among this population.
| S-EPMC8635323 | biostudies-literature
Project description:BackgroundDecision Aids (DAs) effectively translate medical evidence for patients but are not routinely used in clinical practice. Little is known about how DAs are used during patient-clinician encounters.ObjectiveTo characterize the content and communicative function of high-quality DAs during diagnostic clinic visits for prostate cancer.Participants252 men newly diagnosed with localized prostate cancer who had received a DA, 45 treating physicians at 4 US Veterans Administration urology clinics.MethodsQualitative analysis of transcribed audio recordings was used to inductively develop categories capturing content and function of all direct references to DAs (booklet talk). The presence or absence of any booklet talk per transcript was also calculated.ResultsBooklet talk occurred in 55% of transcripts. Content focused on surgical procedures (36%); treatment choice (22%); and clarifying risk classification (17%). The most common function of booklet talk was patient corroboration of physicians' explanations (42%), followed by either physician or patient acknowledgement that the patient had the booklet. Codes reflected the absence of DA use for shared decision-making. In regression analysis, predictors of booklet talk were fewer years of patient education (P = .027) and more time in the encounter (P = .027). Patient race, DA type, time reading the DA, physician informing quality and physician age did not predict booklet talk.ConclusionsResults show that good decision aids, systematically provided to patients, appeared to function not to open up deliberations about how to balance benefits and harms of competing treatments, but rather to allow patients to ask narrow technical questions about recommended treatments.
| S-EPMC5750733 | biostudies-literature
Project description:IntroductionQuality of life in prostate cancer survivorship is becoming increasingly important, with mental and social wellbeing recognised as key components. However, limited global evaluation of psychosocial challenges experienced after treatment exists. Therefore, we aimed to explore the lived experiences of men who underwent radical treatment, and its psychosocial impact.Material and methodsThis qualitative study was conducted using 19 men who had undergone radical treatment (prostatectomy or radiotherapy) for their cancer. Semi-structured interviews were conducted exploring lived experiences of men after treatment. A Structured thematic analysis of collected data was undertaken, with an inductive co-construction of themes through the lens of the biopsychosocial model. Themes generated were considered within a psychological, social, and physical wellbeing framework.ResultsAn initial knowledge gap meant mental wellbeing was strongly impacted initially leading to a 'Diagnostic Blow and the Search for Clarity'. Doubt over individuals' future resulted in 'An Uncertain Future' in many men. Once treatment was completed a 'Reflective journey' began, with men considering their outcomes and decisions made. Social wellbeing was also impacted with many identifying the 'Emotional Repercussions' on their relationships and the impact their diagnosis had on their partner and family. Many subsequently sought to increase their support through 'The Social Network and Advocacy', while physical changes led to an increased need for 'Social Planning'. Finally, physical wellbeing was highlighted by a continual acknowledgement of the 'Natural process of ageing' leading to a reluctancy to seek help, whilst simultaneously attempting to improve existing health via 'The Health Kick'.ConclusionsRadical treatments have a considerable impact on mental and social wellbeing of individuals. Anxiety after diagnosis and significant uncertainty over individual futures exist, with physical complications of treatment leading to social repercussions. Future research should aim to identify forms of support to improve quality of life of these men.
| S-EPMC9757548 | biostudies-literature
Project description:Prostate cancer is a common and life-altering condition among Canadian men, yet little is known about how follow-up care is provided to those who have completed treatment. Despite improving survival rates, survivors experience ongoing needs and are often not provided with support to manage them. This study sought to investigate the post-treatment experiences and needs of prostate cancer survivors and to determine if and how these needs are being met. Using a qualitative description design, prostate cancer survivors who had completed treatment took part in semi-structured interviews. The interviews were recorded and analyzed thematically. The participants experienced varying levels of satisfaction with their follow-up care. While primary care providers played significant roles, continuity of care and specialist involvement varied. Most participants felt unprepared to manage the long-term effects of their cancer due to a lack of information and resources from their healthcare providers. Instead, participants turned to their peers for support. Ongoing physical and psychosocial needs went unmet and had significant impacts on their daily lives. Participants felt that support for these issues should be automatically integrated into their follow-up care. In summary, this study revealed the importance of integrated, patient-centered follow-up care for prostate cancer in Atlantic Canada.
| S-EPMC10742932 | biostudies-literature
Project description:PurposeFocal therapies (FTs) are investigated within prospective studies on selected patients treated for localized prostate cancer (PCa). Benefits are preservation of genitourinary function and reduced complications, but follow-up is elaborate and is associated with uncertainty as cancer-free survival appears to be lower compared to standard radical treatments. The aim of this study was to analyse patient-reported acceptance of FT and evaluate factors associated with treatment decision regret.Methods52 patients who received focal high-intensity focused ultrasound for low- to intermediate-risk PCa between 2014 and 2019 within two prospective trials were eligible for a survey regarding PCa-related treatment regret and quality-of-life (Clark's scale) and the following potential predictors: sociodemographic variables, Charlson Comorbidity Index, subjective aging (AARC-10 SF), and general health-related quality-of-life (SF-12). Cancer persistence/recurrence (multiparametric MRI and fusion biopsy after 12 months) and functional outcomes (EPIC-26 UI/UIO/S) data were also included in this study.ResultsThe overall survey response rate was 92.3% (48/52 patients). Median follow-up was 38 months (interquartile range = 25-50 months). In total, ten patients (20.8%) reported treatment decision regret. In univariable analyses, a clinically meaningful increase in urinary incontinence showed a significant association (OR 4.43; 95% CI 0.99-20.53; p = 0.049) with regret. Cancer recurrence (OR 12.31; 95% CI 1.78-159.26; p = 0.023) and general health worry as a domain of Clark's scale (OR 1.07; 95% CI 1.03-1.14; p < 0.01) were predictors of regret in a multivariable logistic regression model (AUC = 0.892).ConclusionAcceptance of FT is comparable to standard treatments. Extensive follow-up including regular PSA testing does not cause additional regret but careful patient selection and information before FT is crucial.
| S-EPMC8124049 | biostudies-literature
Project description:ObjectivesTo translate and culturally adapt an English language patient decision aid addressing prostate cancer screening, so it can be used by Portuguese men.DesignQualitative study. We followed the European Centre for Disease Prevention and Control's (ECDC) five-step, stakeholder-based approach to adapting health communication materials: (1) selection of materials and process coordinators, (2) early review, (3) translation and back translation, (4) comprehension testing with cognitive semi-structured interviews and (5) proofreading. Content analysis was performed using Ligre software.Setting and participantsCognitive interviews with 15 men to refine a decision aid after its translation. Eligible participants were Portuguese native-speaking men aged 55-69 years old recruited from the local community (urban and suburban) of Oporto district through advertisements in social media and senior universities between January and March 2019. A previous diagnosis of prostate cancer was the single exclusion criterion.ResultsFive main themes are presented: informational content, information comprehension, sociocultural appropriateness, feelings and main message and personal perspective concerning prostate cancer screening. Most men found the translated version of the decision aid to be clear, comprehensive and appropriate for its target population, although some suggested that medical terms could be a barrier. The data collected from men's interviews afforded the researchers the opportunity to clarify concepts and expand existing content.ConclusionsA decision aid was successfully translated and adapted to the Portuguese cultural setting. Our ECDC based approach can be replicated by other workgroups to translate and culturally adapt decision aids.
| S-EPMC7170593 | biostudies-literature