Patient and provider experiences with active surveillance: A scoping review

Kim, Claire; Wright, Frances C.; Hong, Nicole J. Look; Groot, Gary; Helyer, Lucy; Meiers, Pamela; Quan, May Lynn; Urquhart, Robin; Warburton, Rebecca; Gagliardi, Anna R.

doi:10.1371/journal.pone.0192097

Cited by 19 publications

(28 citation statements)

References 107 publications

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“…Such strategies are recommended for early stage prostate and thyroid cancers,114115 and they are increasingly discussed in the context of breast cancer 116. A recommendation for conservative management from the clinician has a big influence on the patient’s decision117 and is likely to be particularly potent in the context of an ongoing primary care relationship, empowering primary care clinicians to optimize patient care. Similarly, clinicians can selectively refer patients to specialists who are similarly committed to minimizing overdiagnosis, and these consultants also have substantial influence 118…”

Section: Minimizing and Managing Overdiagnosismentioning

confidence: 99%

Overdiagnosis in primary care: framing the problem and finding solutions

Kale

Korenstein

2018

BMJ

119

108

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Overdiagnosis, is defined as the diagnosis of a condition that, if unrecognized, would not cause symptoms or harm a patient during his or her lifetime, and it is increasingly acknowledged as a consequence of screening for cancer and other conditions. Because preventive care is a crucial component of primary care, which is delivered to the broad population, overdiagnosis in primary care is an important problem from a public health perspective and has far reaching implications. The scope of overdiagnosis as a result of services delivered in primary care is unclear, though overdiagnosis of indolent breast, prostate, thyroid, and lung cancers is well described and overdiagnosis of chronic kidney disease, depression, and attention-deficit/hyperactivity disorder is also recognized. However, overdiagnosis is a known consequence of all screening and can be assumed to occur in many more clinical contexts. Overdiagnosis can harm patients by leading to overtreatment (with associated potential toxicities), diagnosis related anxiety or depression, and labeling, or through financial burden. Many entrenched factors facilitate overdiagnosis, including the growing use of advanced diagnostic technology, financial incentives, a medical culture that encourages greater use of tests and treatments, limitations in the evidence that obscure the understanding of diagnostic utility, use of non-beneficial screening tests, and the broadening of disease definitions. Efforts to reduce overdiagnosis are hindered by physicians' and patients' lack of awareness of the problem and by confusion about terminology, with overdiagnosis often conflated with related concepts. Clarity of terminology would facilitate physicians' understanding of the problem and the growth in evidence regarding its prevalence and downstream consequences in primary care. It is hoped that international coordination regarding diagnostic standards for disease definitions will also help minimize overdiagnosis in the future.

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Section: Minimizing and Managing Overdiagnosismentioning

confidence: 99%

Overdiagnosis in primary care: framing the problem and finding solutions

Kale

Korenstein

2018

BMJ

119

108

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“…PCa patients' initial relieve of avoiding invasive treatment by selecting AS is soon replaced by uncertainty and anxiety during follow‐up. Kim et al 33 confirm the importance of the patient‐caregiver relationship. They indicate that a positive relationship was an absolute condition for AS‐selection and adherence.…”

Section: Discussionmentioning

confidence: 95%

Optimizing psychosocial support in prostate cancer patients during active surveillance

Donachie

Cornel

Adriaansen

et al. 2020

Int J of Uro Nursing

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What are the psychosocial support needs of prostate cancer (PCa) patients undergoing active surveillance (AS)? The preferred management strategy for low-risk PCa (LR-PCa) is AS. Patients remain under close surveillance to monitor disease progression. However, living with untreated disease has psychosocial implications. The objective of this study was to investigate the psychosocial support needs in PCa patients undergoing AS. According to Marzouk (2018) 30% of patients risk developing anxiety during the first year of AS. Parker (2015) and Tan (2016) suggest approximately 10% of AS-patients request a change to active treatment, often based on anxiety. Pickles (2007) states that psychosocial support can effectively reduce anxiety and uncertainty. A literature based interview guide was used to conduct 17 semi-structured interviews following an explorative qualitative approach. LR-PCa patients, eligible for AS, were enrolled from two participating Dutch urology clinics experienced with AS. Written informed consent was obtained. Inclusion ended after attaining data saturation. The interviews were transcribed verbatim. NVIVO 10 was used for open coding. Participants expressed recurring uncertainty and anxiety caused by medical examinations, lower urinary tract symptoms and erectile dysfunction. Various effective and ineffective coping strategies were adopted by participants. The use of specific strategies was associated with patient-physician relationship, locus-of-control and disease-acceptation. Ineffective coping strategies seemed to impede resilience during stressful situations. Satisfactory decision-making and diseaseacceptation were promoted by immediate availability of relevant, reliable information regarding disease characteristics and treatment options. Early-stage reliable and relevant information, assessment and encouragement of effective coping strategies appear to be important psychosocial support needs during AS. Most participants in this study had spousal support and completed higher education. Future research should determine the generalizability of these findings in a more heterogeneous population.

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“…In addition, survivors and their HCPs understand the challenges posed by a cancer diagnosis and the importance of ongoing adherence to HCP recommendations to potentially increase survival likelihood and/or reduce recurrent or new cancer risk 59 . Additional studies to promote synergistic communication and action by HCPs and survivors are needed 14,60‐62 …”

Section: Discussionmentioning

confidence: 99%

Quality of life outcomes from a randomized controlled trial of patient navigation in Latina breast cancer survivors

et al. 2020

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Introduction Breast cancer survivorship is a life‐long process involving challenges to health‐care communities and individuals, especially Latinas. Patient Navigation has shown some success in meeting these challenges. The purpose of this study was to compare the effects of an enhanced Patient Navigation program (Intervention; PN+) vs Control (PN) over time on general cancer and breast cancer‐specific quality of life (QoL) in Latina breast cancer survivors (BCS). Methods We conducted a 2‐year, two‐arm randomized controlled trial of the “Staying Healthy” program among Latina BCS. The design compared PN+ vs PN over time. We recruited 60 patients into each study arm and randomized them by sequential numerical assignment. PN+ participants received culturally tailored educational materials and active, personalized Patient Navigation services, including phone calls, transportation, and care coordination. PN participants were navigated only upon request. Primary outcomes included general cancer (Functional Assessments of Cancer Therapy [FACTS]‐G) and breast cancer‐specific (FACT‐B) QoL. Results PN+ participants had significantly improved QoL measures compared to PN at 6‐month follow‐up on all subscales (P‐values .007‐.04) except physical well‐being (PWB; P = .11). Intervention effect size coefficient (standard error) for FACT‐G overall was 7.9 (3.1); P = .01. For FACT‐B, it was 10.9 (3.9); P = .006. Again, all subscales showed significant effects [range 1.7‐3.1 (0.8‐1.2); P‐values .006‐.04], except for PWB [1.5 (1.0); P = .16] and social/family well‐being (SWB) [2.1 (1.1); P = .06]. There were no differences between groups at baseline. Discussion Multiple cultural, psychosocial, and socioeconomic variables contributing to these intervention effects will be addressed in future studies. As the national BCS population continues to increase, more Patient Navigation‐focused partnerships among patients, health‐care professionals, research groups, and community organizations are needed to improve BCS experiences. The Staying Healthy program has the potential to serve as a national survivorship care model for improving Latina BCS QoL.

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Patient and provider experiences with active surveillance: A scoping review

Cited by 19 publications

References 107 publications

Overdiagnosis in primary care: framing the problem and finding solutions

Overdiagnosis in primary care: framing the problem and finding solutions

Optimizing psychosocial support in prostate cancer patients during active surveillance

Quality of life outcomes from a randomized controlled trial of patient navigation in Latina breast cancer survivors

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