Dataset Information

"My gut feeling is we could do more..." a qualitative study exploring staff and patient perspectives before and after the implementation of an online prostate cancer-specific holistic needs assessment.

ABSTRACT: BACKGROUND:Men surviving prostate cancer report a wide range of unmet needs. Holistic needs assessments (HNA) are designed to capture these, but are traditionally paper-based, generic, and only carried out in secondary care despite national initiatives advocating a "shared care" approach. We developed an online prostate cancer-specific HNA (sHNA) built into existing IT healthcare infrastructure to provide a platform for service integration. Barriers and facilitators to implementation and use of the sHNA were explored from both the patients and healthcare professionals (HCPs) perspectives. METHODS:This qualitative study consisted of two phases. Phase 1 used semi-structured interviews to explore HCPs (n = 8) and patients (n = 10) perceptions of the sHNA, prior to implementation. Findings were used to develop an implementation strategy. Phase 2 used semi-structured interviews to explore HCPs (n = 4) and patients (n = 7) experienced barriers and motivators to using the sHNA, 9 to 12 months after implementation. Interviews were audio-recorded, transcribed verbatim and thematically analysed. Themes were mapped to the Theoretical Domains Framework. RESULTS:HCPs and patients anticipated many benefits from using the sHNA. Barriers to implementation included: confidence to work in depth with prostate cancer patients, organisational and cultural change, and patient factors. Our implementation strategy addressed these barriers by the provision of disease specific training delivered in part by a clinical nurse specialist; and a peer-led IT supporter. Following implementation HCPs and patients perceived the sHNA as beneficial to their practice and care, respectively. However, some patients experienced barriers in using the sHNA related predominately to symptom perception and time since treatment. HCPs suggested minor software refinements. CONCLUSIONS:This work supports the importance of identifying barriers and motivators to implementation, and using targeted action via the development of an implementation strategy to address these. Whilst this process should be on-going, undertaking this work at an early stage will help to optimise the implementation of the sHNA for future trials.

SUBMITTER: Clarke AL

PROVIDER: S-EPMC6373080 | biostudies-other | 2019 Feb

REPOSITORIES: biostudies-other

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"My gut feeling is we could do more..." a qualitative study exploring staff and patient perspectives before and after the implementation of an online prostate cancer-specific holistic needs assessment.

Clarke Amy L AL Roscoe Julia J Appleton Rebecca R Dale Jeremy J Nanton Veronica V

BMC health services research 20190212 1

<h4>Background</h4>Men surviving prostate cancer report a wide range of unmet needs. Holistic needs assessments (HNA) are designed to capture these, but are traditionally paper-based, generic, and only carried out in secondary care despite national initiatives advocating a "shared care" approach. We developed an online prostate cancer-specific HNA (sHNA) built into existing IT healthcare infrastructure to provide a platform for service integration. Barriers and facilitators to implementation and ...[more]

PMID: 30755188

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Project description:BackgroundIt is increasingly internationally recognized that a cancer diagnosis impacts on people practically and financially as well as physically and psychologically. It is less clear what to do about this. This study introduces an original community service designed to mitigate this wider impact. Nonclinical "link officers" use holistic needs assessment (HNA) to help newly diagnosed people identify and quantify the severity of their physical, psychological, practical, financial, and social concerns. A care plan is then agreed, usually involving community interventions from partner agencies. Following intervention, assessment is repeated. The primary aim of this study was to establish whether there was a significant difference between initial assessment and follow-up, postintervention. Secondary aim was to identify potential predictors of increased levels of concern at baseline and follow-up.MethodPre- and postintervention observational cohort study. Paired t test examined the difference in mean (SD) concern severity between baseline and follow-up. Multiple linear regression models were computed to hypothesize potential predictors of initial concern severity and severity change.ResultsThe service saw 2413 people 2014-2017. Participants identified average 5.5 (4.7) concerns, financial concerns being most frequent. Mean severity at baseline was 7.12 (out of 10) (2.50), reducing to 3.83 (3.49) post-treatment, paired t(4454) = 64.68, P < 0.0001, reduction of 3.31 (95% CI 3.21-3.41). Factors associated with higher initial concern included unemployment and caring responsibilities. Unemployment was also associated with a smaller reduction of concern severity at follow-up.ConclusionPatient level of concern went from a level associated with specialist referral to a much more manageable level. This original finding is internationally significant because it extends Khera et al's (2017) "provocative idea" that all patients should be screened for financial problems to show that they can be helped with all their concerns. This article describes a successful, transferable model of community care.

Project description:BackgroundRetention (participants completing a trial) is a persistent, and often under-studied, challenge within clinical trials. Research on retention has focussed on understanding the actions of participants who decide to remain or withdraw from trial participation and developing interventions to target improvements. To better understand how trial staff may influence participants to remain or withdraw from trials, it is important to explore the experiences of staff that recruit and retain said participants and how the process of recruitment impacts retention.MethodsTwo qualitative interview studies informed by the Theoretical Domains Framework (TDF) were conducted with staff involved in various stages of clinical trials. The first set of interviews were focussed on staff perceptions about why participants failed to be retained and what helped to keep others engaged in trials, but also explored more generally what strategies or factors contributed to retention in trials. The second set of interviews were focussed on staff perceptions specifically about the recruitment and informed consent process and how that may influence trial retention. All interviews were analysed using the TDF and assigned to relevant behavioural domains according to perceived barriers/facilitators of the target behaviour. Belief statements were generated, summarising the narrative content of related responses within these behavioural domains. These belief statements were further analysed for themes that captured higher order relationships between separate beliefs within and between behavioural domains.ResultsTwenty-five participants (9 retention staff and 16 recruitment staff) were interviewed. Themes describing the barriers/facilitators to retention broadly, and to communication of retention information at consent, were generated. Four themes on retention broadly and six themes on communication of retention information at consent were identified. Overall, beliefs within all fourteen TDF domains populated these themes.ConclusionsThis study explored staff perspectives on retention and how they interpret their behaviour as contributing to retention success. Perspectives varied considerably but several key themes regarding communication were seen consistently. Specific barriers and facilitators within these findings will serve to guide the design of a behavioural intervention aimed at addressing issues within retention. Findings contribute to a notable gap in the literature on staff behaviour in trials and on retention generally.

Project description:The potential of technology to aid integration of care delivery systems is being explored in a range of contexts across a variety of conditions in the United Kingdom. Prostate cancer is the most common cancer in UK men. With a 10-year survival rate of 84%, there is a need to explore innovative methods of care that are integrated between primary health care providers and specialist teams in order to address long-term consequences of the disease and its treatment as well as to provide continued monitoring for recurrence.Our aim was to test the feasibility of a randomized controlled trial to compare a model of prostate cancer continuing and follow-up care integration, underpinned by digital technology, with usual care in terms of clinical and cost-effectiveness, patient-reported outcomes, and experience.A first phase of the study has included development of an online adaptive prostate specific Holistic Needs Assessment system (HNA), training for primary care-based nurses, training of an IT peer supporter, and interviews with health care professionals and men with prostate cancer to explore views of their care, experience of technology, and views of the proposed intervention. In Phase 2, men in the intervention arm will complete the HNA at home to help identify and articulate concerns and share them with their health care professionals, in both primary and specialist care. Participants in the control arm will receive usual care. Outcomes including quality of life and well-being, prostate-specific concerns, and patient enablement will be measured 3 times over a 9-month period.Findings from phase 1 indicated strong support for the intervention among men, including those who had had little experience of digital technology. Men expressed a range of views on ways that the online system might be used within a clinical pathway. Health care professionals gave valuable feedback on how the output of the assessment might be presented to encourage engagement and uptake by clinical teams. Recruitment to the second phase of the study, the feasibility trial, commenced March 2017.To our knowledge, this study is the first in the United Kingdom to trial an online holistic needs assessment for men with prostate cancer, with data shared between patients and primary and secondary care providers. This study addresses recommendations in recent policy documents promoting the importance of data sharing and enhanced communication between care providers as a basis for care integration. We anticipate that this model of care will ultimately provide important benefits for both patients and the National Health Service.International Standard Randomized Controlled Trial Number (ISRCTN): 31380482; http://www.isrctn.com/ISRCTN31380482 (Archived by WebCite at http://www.webcitation.org/6s8I42u5N).

Dataset Information

"My gut feeling is we could do more..." a qualitative study exploring staff and patient perspectives before and after the implementation of an online prostate cancer-specific holistic needs assessment.

Publications

"My gut feeling is we could do more..." a qualitative study exploring staff and patient perspectives before and after the implementation of an online prostate cancer-specific holistic needs assessment.

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