‘Very difficult for an ordinary guy’: Factors influencing the quality of treatment decision-making amongst men diagnosed with localised and locally advanced prostate cancer: Findings from a UK-wide mixed methods study

Wagland, Richard; Nayoan, Johana; Matheson, Lauren; Rivas, Carol; Brett, Jo; Downing, Amy; Wilding, Sarah; Butcher, Hugh; Gavin, Anna; Glaser, Adam; Watson, Eila

doi:10.1016/j.pec.2018.12.004

Cited by 13 publications

(21 citation statements)

References 28 publications

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“…Interestingly, we observed that patients who completed clinic questionnaires placed greater importance on a wider range of symptoms and side effects in comparison to those who participated in the support group NGTs, whereas patients recruited from support groups also prioritised elements from the following domains: "Functionality & Day to Day Living"; "Relationships and Social Life"; and "Mood and Emotion" (supplementary file 2). This variation in prioritisation of HRQoL domains is in agreement with the wider evidence base that shows patients may have discrete information needs across their cancer journey, influenced by multiple factors including the different treatments available to patients throughout their illness; the life-limiting side effects these treatments can bring; and how they impact on a patient's support and care needs [42,43]. Clinicians need to be cognisant of patients' diverse and changing areas of importance, and more systematic gathering and exchange of information across the patient journey could better support dialogues as part of shared decision-making and supportive care.…”

Section: Key Findingssupporting

confidence: 78%

What matters to patients and clinicians when discussing the impact of cancer medicines on health-related quality of life? Consensus-based mixed methods approach in prostate cancer

Corcoran

Ferguson

Mueller

et al. 2021

Support Care Cancer

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Objective To identify what matters to clinicians and patients when discussing cancer medicines’ impact on health-related quality of life (HRQoL). Methods A framework of HRQoL domain/domain elements was developed, informed by analysis of published patient reported outcome measures (PROMs), applicable to prostate cancer. Using mixed methods (eDelphi, Nominal Group Technique and questionnaire), prostate cancer clinicians and patients attending prostate cancer clinics and support groups were asked which domains/domain elements would be important to them when discussing the impact prostate cancer medicines have on their HRQoL. Results Twenty-one clinicians and 71 patients participated from the West of Scotland. Clinicians and patients identified 53/62 domain elements across seven domains as important, of which 32 (60%) were common to both groups. Clinicians placed more importance than patients on Mood & Emotion; in contrast, patients placed importance on a broader range of Symptoms & Side Effects, being informed about their care, and having effective healthcare professional collaboration. Conclusion This study provides insight into the similarities and differences between what clinicians and patients think is important when discussing the impact of cancer medicines on HRQoL. Future research should involve exploring the potential for consistency of medicines PROMs across different cancer types to support patient-clinician communication and drive improvements in care.

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Section: Key Findingssupporting

confidence: 78%

What matters to patients and clinicians when discussing the impact of cancer medicines on health-related quality of life? Consensus-based mixed methods approach in prostate cancer

Corcoran

Ferguson

Mueller

et al. 2021

Support Care Cancer

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“…with poor quality of life, [2] adverse impacts on work, [3] and informational needs. [4][5][6] Informational needs span across diagnosis and treatment to treatment effects, expectations for progressive disease and symptom management. [4,5,7,8] Informational needs remain unmet in up to a half of patients, [9,10] continue after diagnosis, change over time, [9] are associated with lower physical, social and role functioning, higher levels of illness concern, [10] and ability to take part in treatment-decision making.…”

Section: Introductionmentioning

confidence: 99%

Prostate cancer: unmet supportive and palliative care needs: national survey of patients and family carers

Johnson

Huang

Chen

et al. 2021

BMJ Support Palliat Care

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ObjectivesMen living with prostate cancer have supportive and palliative needs. However, few studies detail unmet needs (vs quality of life measurement) or include data from those with advanced disease. We aimed to identify unmet needs of people living with prostate cancer (men, family carers), including those with advanced disease.MethodsMixed-methods national survey (patient Supportive Care Needs Survey; Carer Support Needs Assessment Tool) and health status (EuroQol Visual Analogue Scale). Quantitative data were explored using regression analysis. Free text data were subjected to thematic analysis.Results216 men (mean age 65±8.5 years; active cancer 136 [63%]) and 97 carers (68 (70%) spouse/partner) provided data. 133 men (62%) reported moderate-to-high need which was more likely in advanced disease. Men’s health status was worse with active vs remitted disease (mean difference −11; 95% CI −17 to −5; p<0.001). 85 (88%) carers reported at least one unmet need relating to ‘enabling them to care’ and 83 (86%) relating to ‘their own well-being’. Carers with chronic illnesses had more unmet needs (p=0.01 to p=0.04) and patient receipt of palliative care independently predicted higher unmet carer needs (p=0.02).Free text data demonstrated widespread burden with: (1) poor communication/information, including about palliative care; (2) poorly managed symptoms/concerns and (3) poor care co-ordination. Incontinence, sexual dysfunction and hormone side-effects were serious problems, often left unaddressed.ConclusionsMany living with prostate cancer continue with wide-ranging concerns. Lack of systematic, ongoing needs assessment and poor communication compound inadequate clinical pathways. Person-centred care, interdisciplinary working and integrated palliative care should be resourced.

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“…Although participants expressed that information about the diagnostic process and what to expect was important, some preferred the healthcare providers to make the decisions and keep the information at a basic level. Previous studies have found that not all patients desire to be involved in decisions about their treatment after being diagnosed with PCa [ 31 , 32 ]. Findings in the current study suggest that men will benefit from their individual information preferences and wishes for involvement being identified early in the diagnostic phase of PCa.…”

Section: Discussionmentioning

confidence: 99%

Men’s perception of information and descriptions of emotional strain in the diagnostic phase of prostate cancer—a qualitative individual interview study

Søndergaard

Lode

Kjosavik

et al. 2021

Scandinavian Journal of Primary Health Care

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Objective To explore men`s perception of information and their possible emotional strain in the diagnostic phase of prostate cancer. Design, setting, patients A qualitative explorative research design was employed. Data were collected from June to November 2017. The study was set at a urological outpatient clinic at a university hospital in Norway. Semi-structured interviews were conducted with ten men who had been examined for prostate cancer. Interviews were analyzed using Systematic Text Condensation (STC). Results The analysis revealed three themes. The theme ‘Different needs and perceptions of information’ illustrated that information should be personalized. Despite different information needs, insufficient information about prostate cancer may prevent some men from being involved in decisions. The theme, ‘A discovery of not being alone’, indicated that a sense of affinity occurs when men realize the commonality of prostate cancer. Some men benefited from other men’s experiences and knowledge about prostate cancer. The last theme ‘Worries about cancer and mortality’ showed that the emotional strain was affected by men’s knowledge of cancer and the received information. Men expressed conflicting feelings toward prostate cancer that could be difficult to express. Conclusions The findings indicate that men in the diagnostic phase of prostate cancer are not a homogeneous group, but need personalized information. Some men may benefit from other men’s experiences and support. Men’s emotional strain can affect their communication about prostate cancer, which should be acknowledged. Procedures that identify patients’ information needs early on should be an integrated part of the diagnostic phase of prostate cancer. KEY POINTS Knowledge about men’s information needs and possible emotional strain in the diagnostic phase of prostate cancer are limited. Men with suspected prostate cancer have different preferences and information needs; however, insufficient information prevents men from participating in decisions. Men experience a sense of affinity with other men affected by prostate cancer, and some men benefit from exchanging experiences. Men consider prostate cancer as a less aggressive type of cancer but may experience emotional strain.

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‘Very difficult for an ordinary guy’: Factors influencing the quality of treatment decision-making amongst men diagnosed with localised and locally advanced prostate cancer: Findings from a UK-wide mixed methods study

Abstract: , E. (2018). 'Very difficult for an ordinary guy': Factors influencing the quality of treatment decision-making amongst men diagnosed with localised and locally advanced prostate cancer: findings from a UK-wide mixed methods study. Patient Education and Counseling.

Cited by 13 publications

References 28 publications

What matters to patients and clinicians when discussing the impact of cancer medicines on health-related quality of life? Consensus-based mixed methods approach in prostate cancer

What matters to patients and clinicians when discussing the impact of cancer medicines on health-related quality of life? Consensus-based mixed methods approach in prostate cancer

Prostate cancer: unmet supportive and palliative care needs: national survey of patients and family carers

Men’s perception of information and descriptions of emotional strain in the diagnostic phase of prostate cancer—a qualitative individual interview study

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