Symptom burden and information needs in prostate cancer survivors: a case for tailored long‐term survivorship care

Bernat, Jennifer K.; Wittman, Daniela; Hawley, Sarah T.; Hamstra, Daniel A.; Helfand, Alexander M.; Haggstrom, David A.; Darwish-Yassine, May; Skolarus, Ted A.

doi:10.1111/bju.13329

Cited by 63 publications

(62 citation statements)

References 25 publications

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“…These findings, as well as our prior research [19] suggest that there are unmet information needs in the prostate cancer survivor population, and underscore the fact that prostate cancer survivors continue to have ongoing questions long after their treatment is completed. We found that general prostate cancer information, symptom management, and managing sexual difficulties were all critical topics of interest in this population.…”

Section: Discussionsupporting

confidence: 63%

“…In a previous study, we reported on long-term prostate cancer survivors’ symptom burden and found that men with greater burden were more likely to need tailored information (e.g., high sexual symptom burden was associated with a greater need for relationship information) [19]. Another previous study from this dataset reported 59.2% of prostate cancer survivors preferred receiving information from their health care providers.…”

Section: Introductionmentioning

confidence: 87%

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Negative information-seeking experiences of long-term prostate cancer survivors

et al. 2016

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Purpose Many prostate cancer survivors have lasting symptoms and disease-related concerns for which they seek information. To understand survivors’ information seeking experiences, we examined the topics of their information searches, their overall perceptions of the search, and perceptions of their health information seeking self-efficacy (i.e., confidence in their ability to obtain information). We hypothesized that negative search experiences and lower health information seeking self-efficacy would be associated with certain survivor characteristics such as non-white race, low income, and less education. Methods This was a retrospective study using data from the Michigan Prostate Cancer Survivor Study (state-based survey of long-term prostate cancer survivor outcomes, N=2,499, response rate = 38%). Participants recalled their last search for information and reported the topics and overall experience. We conducted multivariable regression to examine the association between survivor characteristics and the information-seeking experience. Results Nearly a third (31.7%) of prostate cancer survivors (median age of 76 years and 9 years since diagnosis) reported having negative information seeking experiences when looking for information. However, only 13.4% reported having low health information seeking self-efficacy. Lower income and less education were both significantly associated with negative information seeking experiences. Conclusions Our findings suggest that many long-term prostate cancer survivors have negative experiences when searching for information, and lower income and less education were survivor factors related to negative information seeking experiences. Implications for cancer survivors We advocate for ongoing, information needs assessment at the point-of-care as the survivorship experience progresses to assess and potentially improve survivors’ quality of life.

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Section: Discussionsupporting

confidence: 63%

Section: Introductionmentioning

confidence: 87%

Negative information-seeking experiences of long-term prostate cancer survivors

et al. 2016

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“…) and there is evidence to suggest that these effects can persist for a decade or more (Bernat et al . ; Carlsson et al . ).…”

Section: Introductionmentioning

confidence: 98%

“…; Bernat et al . ; Yousaf et al . ); somatisation of mental health symptoms (Kockler & Heun ; Fiske et al .…”

Section: Introductionmentioning

confidence: 99%

“…Survival rates for prostate cancer have increased in most countries in the past two decades (Allemani et al 2015) such that in the UK, North America and Australia/New Zealand approximately 90% of men now survive their prostate cancer at least 5 years and >80% survive for 10 years or more (Australian Institute of Health and Welfare 2013;Cancer Research UK 2014;American Cancer Society 2015). Although many more men are surviving prostate cancer, they are living with high and persistent symptom burdens often not addressed in follow-up care (Smith et al 2000;Bernat et al 2015;Carlsson et al 2015;Gavin et al 2015). In a recent UK study, approximately one-third of men up to 2 years post-prostate cancer diagnosis reported concerns with sexual, urinary and bowel function (Watson et al 2015) and there is evidence to suggest that these effects can persist for a decade or more (Bernat et al 2015;Carlsson et al 2015).…”

Section: Introductionmentioning

confidence: 99%

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Men's help‐seeking in the first year after diagnosis of localised prostate cancer

Hyde

Newton

Galvão³

et al. 2016

Eur J Cancer Care

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This study describes sources of support utilised by men with localised prostate cancer in the first year after diagnosis and examines characteristics associated with help‐seeking for men with unmet needs. A cross‐sectional survey of 331 patients from a population‐based sample who were in the first year after diagnosis (M = 9.6, SD = 1.9) was conducted to assess sources of support, unmet supportive care needs, domain‐specific quality of life and psychological distress. Overall, 82% of men reported unmet supportive care needs. The top five needs were sexuality (58%); prostate cancer‐specific (57%); psychological (47%); physical and daily living (41%); and health system and information (31%). Professional support was most often sought from doctors (51%). Across most domains, men who were older (Ps ≤ 0.03), less well educated (Ps ≤ 0.04) and more depressed (Ps ≤ 0.05) were less likely to seek help for unmet needs. Greater sexual help‐seeking was related to better sexual function (P = 0.03), higher education (P ≤ 0.03) and less depression (P = 0.05). Unmet supportive care needs are highly prevalent after localised prostate cancer diagnosis with older age, lower education and higher depression apparent barriers to help‐seeking. Interventions that link across medicine, nursing and community based peer support may be an accessible approach to meeting these needs. Clinical Trial Registry: Trial Registration: ACTRN12611000392965.

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Avoiding the ‘survivorship abyss’: Qualitative insights from 15‐year prostate cancer survivors

et al. 2021

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Objective: As many men diagnosed with prostate cancer (PC) are now living well beyond diagnosis and treatment, these survival gains necessitate improved understanding of long-term survivorship experiences. This is the first qualitative study that aimed to provide insights into PC survivors' adjustment to diagnosis and any persisting or emerging cancer/treatment-related issues over 15+ years.Methods: Semi-structured interviews were conducted with 37 men purposively sampled from the 15-year follow-up phase of a population-wide cohort study, the New South Wales Prostate Cancer Care and Outcomes Study (PCOS). Interview data were transcribed and thematically analysed applying a framework methodology. Results:The majority of participating men (88.6%) had been diagnosed with localised disease and were treated with radical prostatectomy as primary treatment (54.1%). Four main interconnecting themes relating to men's long-term survivorship experience with PC were identified: (1) Survivorship reflections, (2) interactions with the healthcare system, (3) personal and social relationships and (4) dominant coping strategies. Many men reported gaps along the continuum of care and a feeling of abandonment across their long-term survivorship, encompassed by a perceived lack of psychosocial and informational support for persisting treatment side-effects, especially sexual dysfunction. Receiving adequate survivorship care and trusting patient-clinician relationships appeared to be associated with greater resilience and positivity in the men's acceptance of cancer-related long-term challenges and personal limitations.Conclusions: Long-term PC survivors continue to experience lasting treatment impacts, with many men reporting unmet needs and a lack of continuity of multidisciplinary care. Implementation of coordinated and tailored survivorship care and shared care pathways with multidisciplinary practitioners will facilitate men's improved engagement and timely access to supportive care interventions, helping to avoid the 'survivorship abyss'.

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Symptom burden and information needs in prostate cancer survivors: a case for tailored long‐term survivorship care

Cited by 63 publications

References 25 publications

Negative information-seeking experiences of long-term prostate cancer survivors

Negative information-seeking experiences of long-term prostate cancer survivors

Men's help‐seeking in the first year after diagnosis of localised prostate cancer

Avoiding the ‘survivorship abyss’: Qualitative insights from 15‐year prostate cancer survivors

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