'Paper care not patient care': Nurse and patient experiences of comprehensive risk assessment and care plan documentation in hospital.

AIMS AND OBJECTIVES: To explore organisation-wide experiences of person-centred care and risk assessment practices using existing healthcare organisation documentation. BACKGROUND: There is increasing emphasis on multidimensional risk assessments during hospital admission. However, little is known about how nurses use multidimensional assessment documentation in clinical practice to address preventable harms and optimise person-centred care. DESIGN: A qualitative descriptive study reported according to COREQ. METHODS: Metropolitan tertiary hospital and rehabilitation hospital servicing a population of 550,000. A sample of 111 participants (12 patients, 4 family members/carers, 94 nurses and 1 allied health professional) from a range of wards/clinical locations. Semi-structured interviews and focus groups were conducted at two time points. The audio recording was transcribed, and an inductive thematic analysis was used to provide insight from multiple perspectives. RESULTS: Three main themes emerged: (1) 'What works well in practice' included: efficiency in the structure of the documentation; the Introduction, Situation, Background Assessment, Recommendation (ISBAR) framework and prompting for clinical decision-making were valued by nurses; and direct patient care is always prioritised. (2) 'What does not work well in practice': obtaining the patient's signature on daily care plans; multidisciplinary (MDT) involvement; duplication of paperwork and person-centred goals are not well-captured in care plan documentation. (3) 'Experience of care'; satisfaction of person-centred care; communication in the MDT was important, but sometimes insufficient; patients had variable involvement in their daily care plan; and inadequate integration of care between MDT team which negatively impacted patients. CONCLUSIONS: Efficient and streamlined documentation systems should herald feedback from nurses to address their clinical workflow needs and can support, and capture, their decision-making that enables partnership with patients to improve the individualisation of care provision. RELEVANCE TO CLINICAL PRACTICE: The integration of effective MDT involvement in clinical documentation was problematic and resulted in unmet supportive care from the patient's perspective.

What Are the Unmet Supportive Care Needs of People Affected by Cancer: An Umbrella Systematic Review.

OBJECTIVE: The aim of this umbrella systematic review was to critically synthesize unmet supportive care needs of people affected by cancer. DATA SOURCES: The Joanna Briggs Institute (JBI) umbrella review method provided an overall examination of the body of evidence that was available in relation to the unmet supportive care needs among people living with cancer. All qualitative, quantitative, and mixed methods reviews were included irrespective of review design. Electronic databases were searched using a wide range of search terms. All records were managed using the software package Endnote X21 and uploaded to Covidence systematic review software. Duplication of records were removed. A preselection eligibility criterion was applied to all records. Data extraction and methodological quality assessment was conducted independently by two reviewers, and a meta-level narrative synthesis conducted. CONCLUSION: A total 30 systematic reviews were included representing a total of 666 publications globally. Irrespective of the type of cancer there were many commonalities in relation to the reported experiences of unmet supportive care needs, which therefore enables the development of targeted future clinical trials, clinical guidelines, and policy contribution. In descending order of frequency, the highest unmet supportive care needs were related to psychological/emotional (30 out of 30), health system/information (29 out of 30), interpersonal/intimacy (21 out of 30), social (20 out of 30), physical (19 out of 30), family (18 out of 30), practical (16 out of 30), daily living (10 out of 30), spiritual needs (8 out of 30), patient-clinician communication (8 out of 30), and cognitive needs (5 out of 30). IMPLICATIONS FOR NURSING PRACTICE: This umbrella review has underscored fundamental shortcomings in care delivery irrespective of the patient population and the type of cancer. People with cancer are continually reporting that their needs are not being met across many supportive care domains. It is time for change within the health care system and to full leverage multidisciplinary person-centered models of care to optimize recovery and survivorship experiences. In the meantime, policy makers and cancer care clinicians are encouraged to reflect on these findings to address individualized care needs.

Randomised controlled trial comparing the clinical and cost-effectiveness of various washout policies versus no washout policy in preventing catheter associated complications in adults living with long-term catheters: study protocol for the CATHETER II study.

BACKGROUND: Various washout policies are widely used in adults living with long-term catheters (LTC). There is currently insufficient evidence on the benefits and potential harms of prophylactic LTC washout policies in the prevention of blockages and other LTC-related adverse events, such as urinary tract infections. CATHETER II tests the hypothesis that weekly prophylactic LTC washouts (normal saline or citric acid) in addition to standard LTC care reduce the incidence of catheter blockage requiring intervention compared to standard LTC care only in adults living with LTC. METHODS: CATHETER II is a pragmatic three-arm open multi-centre superiority randomised controlled trial with an internal pilot, economic analysis, and embedded qualitative study. Eligible participants are adults aged ≥ 18 years, who have had a LTC in use for ≥ 28 days, have no plans to discontinue the use of the catheter, are able to undertake the catheter washouts, and complete trial documentation or have a carer able to help them. Participants are identified from general practitioner practices, secondary/tertiary care, community healthcare, care homes, and via public advertising strategies. Participants are randomised 1:1:1 to receive a weekly saline (0.9%) washout in addition to standard LTC care, a weekly citric acid (3.23%) washout in addition to standard LTC care or standard LTC care only. Participants and/or carers will receive training to administer the washouts. Patient-reported outcomes are collected at baseline and for 24 months post-randomisation. The primary clinical outcome is catheter blockage requiring intervention up to 24 months post-randomisation expressed per 1000 catheter days. Secondary outcomes include symptomatic catheter-associated urinary tract infection requiring antibiotics, catheter change, adverse events, NHS/ healthcare use, and impact on quality of life. DISCUSSION: This study will guide treatment decision-making and clinical practice guidelines regarding the effectiveness of various prophylactic catheter washout policies in men and women living with LTC. This research has received ethical approval from Wales Research Ethics Committee 6 (19/WA/0015). TRIAL REGISTRATION: ISRCTN ISRCTN17116445 . Registered prospectively on 06 November 2019.

Identifying the unmet supportive care needs of people affected by kidney cancer: a systematic review.

PURPOSE: To synthesize existing evidence on the unmet supportive care needs of people affected by kidney cancer, across the cancer care continuum. METHODS: A systematic review was conducted according to the PRISMA Statement Guidelines. Electronic databases (CINAHL, MEDLINE, and PsychINFO) were searched using key search terms. Articles were assessed according to pre-specified eligibility criteria. Data extraction and quality appraisal were conducted. The findings were integrated in a narrative synthesis. RESULTS: One thousand sixty-three publications were screened, and 18 publications met the inclusion criteria. The following domains of unmet needs in order of frequency included psychological/emotional needs (17/18: 94%), physical needs (10/18: 56%), social needs (4/18: 22%), interpersonal/intimacy needs (4/18: 22%), patient-clinician communication needs (3/18: 17%), family-related needs (3/18: 17%), health system/information needs (3/18: 17%), spiritual needs (3/18: 17%), daily living needs (2/18: 11%), practical needs (1/18: 6%), and cognitive needs (1/18: 6%). CONCLUSIONS: There was a wide range of unmet supportive care needs experienced by people diagnosed with kidney cancer. A prominent focus was on psychological and physical needs. Further research is needed to understand how clinical (stage/treatment) and demographic (age/socio-economic/ethnicity) variables may moderate or mediate the relationship with unmet needs over time. With many unmet needs identified, this review provides a starting place to inform future work to address the complex unmet supportive care needs of people affected by kidney cancer. IMPLICATIONS FOR CANCER SURVIVORS: Individuals living with kidney cancer have many unmet supportive care needs, and future research is needed to learn about what are the most pressing needs and how to best address these concerns to ensure holistic person-centered care is delivered.

Nurse-led telephone notification of a prostate cancer diagnosis: Prospective analysis of men's preferences for and experiences of a same-day assessment and diagnostic clinic.

OBJECTIVE: The 'One Stop Prostate Clinic' (OSPC) was a same-day prostate cancer assessment and/or diagnostic clinic. Preferences and experiences of men who received initial telephone notification of their prostate biopsy results (cancer or benign) by the OSPC Clinical Nurse (CN) are reported. METHODS: Prospective mixed methods study using survey instrument and thematic analysis of OSPC preferences and experiences. RESULTS: One thousand men attended the OSPC between August 2011 and November 2017, 876 underwent prostate biopsies; 790/876 (90%) men consented to telephone notification of biopsy results, 5/876 (1%) declined and 79/876 (9%) were ineligible/not contacted. 220/403 men (55%) returned the OSPC questionnaire; 135/220 (61%) men received a cancer diagnosis, 119/132 (90%) would choose this method again and 7/132 (5.5%) would not and 6/132 (4.5%) were unsure; 94/135 (70%) reported no disadvantages with this notification method. Overall satisfaction rate with the OSPC was 96% (209/218) men. CONCLUSION: Initial telephone notification of prostate biopsy results by the OSPC CN was preferred by the vast majority of eligible men. Many men with a cancer diagnosis did not experience any disadvantages. This method of results delivery can be incorporated by other tumour groups.

What are the unmet supportive care needs of men affected by penile cancer? A systematic review of the empirical evidence.

PURPOSE: To systematically evaluate evidence regarding the unmet supportive care needs of men affected by penile cancer and their partners to create a holistic model of care and inform clinical practice guidelines. METHODS: We searched CINAHL, MEDLINE, PsychINFO, Embase, and the Cochrane Library (CCRT and CDSR) controlled trials databases and clinicaltrial.gov from 1990 to April 2020. This review was reported according to the Preferred Reporting Items for Systematic Review and Meta-analysis (PRISMA) statement. RESULTS: 18 articles were included, reporting the results from 17 studies. Included reports used qualitative (seven studies) and survey (ten studies). Across these studies, men reported that the diagnosis and subsequent treatment of penile cancer affected physical, psychological and sexual well-being with each facet impacting and being intertwined with the other at varying degrees. There was varying complexity of unmet needs in men and partners pre-surgery, post-surgery and into survivorship. CONCLUSIONS: Moderate evidence exists that men affected by penile cancer experience a range of unmet supportive care needs across the international literature. Further work to evaluate the impact of penile cancer on partners is required.

What Are the Experiences of Men Affected by Prostate Cancer Participating in an Ecological Momentary Assessment Study?

BACKGROUND: Within the cluster of self-report methodologies, ecological momentary assessment (EMA) is a method used in health services research whereby a participant repeatedly reports on affect, behaviors, symptoms, and cognitions as they occur in real time in the participant's natural environment. However, little is known about the impact of participating in an EMA study on individuals' experiences who are affected by prostate cancer. OBJECTIVES: The aims of this study were to explore the lived experiences of men affected by prostate participating in an EMA study and assess whether their participation in EMA alters their representation of their condition. METHODS: Participants (n = 12) were purposively recruited from 2 university teaching hospitals in Scotland. Semistructured interviews were conducted with men affected by prostate cancer following the completion of EMA data collection. Data were analyzed using thematic analysis. RESULTS: The lived experience of prostate cancer included 6 superordinate themes: isolation in the healthcare system, lack of shared care plans, informational support, coping with prostate cancer, fear of death and dying, and vocational rehabilitation. The organizing theme electronic diary as an intervention included 4 superordinate themes: changing self-management behaviors, habitual experience, changing perceptions, and diary in daily life. CONCLUSION: We observed that men participating in the EMA study described several methodological complexities, which need to be addressed through future research. IMPLICATIONS FOR PRACTICE: Importantly, there is a need for the health system to prioritize research and develop a more holistic approach to prostate cancer care in line with men's preferences and needs in the future.

An ecological momentary assessment of self-management in prostate cancer survivors.

PURPOSE: To assess the 'real-time' self-management strategies employed by prostate cancer survivors to inform personalised supportive care interventions in the future. METHOD: A purposive sampling framework was used to recruit men with different stages of cancer and treatment to an ecological momentary assessment (capturing experiences in real time) study. Each participant was prompted by an audio alert to complete self-report questionnaires three times per day (93 data entries in total) for a total duration of 31 days. The personal digital assistant (PDA) and pocket interview software were used. RESULTS: Prostate cancer survivors experienced a wide range of after-effects of therapy for which they used various self-management strategies. Many of the men experienced sexual dysfunction but did not perform any self-management. CONCLUSION: Our findings reinforce the importance of having access to tailored, timely and person-centred supported self-management care plans. Real-time monitoring data can provide helpful information to facilitate tailored recommendations for self-management. IMPLICATIONS FOR CANCER SURVIVORS: Prostate cancer survivors can experience unmet supportive care needs which may increase men's demands to perform self-management of their condition. Future clinical intervention studies aimed at utilising the remote exchange of real-time data serves to optimise tailored supported self-management.

Development and preliminary testing of a brief clinical tool to enable daily monitoring of chemotherapy toxicity: The Daily Chemotherapy Toxicity self-Assessment Questionnaire.

Close monitoring of chemotherapy toxicity can be instrumental in ensuring prompt symptom management and quality care. Our aim was to develop a brief clinical tool to enable daily assessment of chemotherapy toxicity and investigate/establish its content validity, feasibility/applicability, internal consistency and stability. Development of the Daily Chemotherapy Toxicity self-Assessment Questionnaire (DCTAQ) was based on an initial item pool created from two scoping reviews. Expert panel review (n = 15) and cognitive debriefing with patients with cancer (n = 7) were used to establish content validity. Feasibility/acceptability, applicability (self-report vs. interview-like administration), internal consistency (KR-20) and test-retest reliability (at 1-hr intervals) of the DCTAQ were field-tested with 82 patients with breast or colorectal cancer receiving active chemotherapy at eight hospitals. Initial development/content validity stages enabled item revisions and re-wording that led to a final, 11-item DCTAQ version with 10 core symptom items plus one open-ended "any other symptom" item. Feasibility and acceptability were demonstrated through the absence of participant withdrawals, absence of missing data and no complaints about tool length. The DCTAQ was found to have modest internal consistency (KR-20 = 0.56), but very good test-retest reliability. The DCTAQ is a brief clinical tool that allows for rapid and accurate daily assessments of chemotherapy toxicity in clinical practice.

Unmet Supportive Care Needs of Men With Locally Advanced and Metastatic Prostate Cancer on Hormonal Treatment: A Mixed Methods Study.

BACKGROUND: Men affected by prostate cancer who are undergoing hormone therapy can endure a range of symptoms that can adversely affect quality of life. Little research has been conducted to date, to understand the specific unmet supportive care needs of this patient group within the context of current service delivery. OBJECTIVE: The aim of this study was to understand the experiences of unmet supportive care needs of men affected by prostate cancer on hormone therapy in the United Kingdom. METHODS: Mixed methods study recruited 31 men with ≥T3 prostate Cancer or worse and treated by hormone therapy. A small cross-sectional survey (European Organization for Research and Treatment of Cancer [EORTC] C30 and PR25, Self-Management Self-Efficacy Scale, and the Supportive Care Needs Survey) was used to inform the interview schedule. Semi-structured interviews were conducted, and framework approach was used to analyze the data. RESULTS: Complex unmet supportive care needs that were related to physical, psychological/emotional, intimacy/sexual, practical, health system/informational, existential, and patient/clinician communication needs are experienced. Men articulated that current healthcare delivery is failing to provide a holistic person-centered model of care. CONCLUSION: This is one of the few studies that have identified the unmet supportive care needs of men receiving hormone therapy for ≥T3 prostate Cancer or worse. The needs are multiple and far-ranging. IMPLICATIONS FOR PRACTICE: Despite national cancer reforms, unmet supportive care needs persist. The findings from this study may be central in the re-design of future services to optimize men's quality of life and satisfaction with care. Clinicians are encouraged to use these finding to help them optimize care delivery and individual quality of life.

Identifying the unmet supportive care needs of men living with and beyond prostate cancer: A systematic review.

PURPOSE: Men affected by prostate cancer are a patient population in need of on-going person-centred supportive care. Our aim was to synthesise current available evidence with regard to the unmet supportive care needs of men living with and beyond prostate cancer. METHODS: A systematic review was conducted according to the PRISMA Statement Guidelines. Electronic databases (DARE, Cochrane MEDLINE, BNI, PsychINFO, EMBASE and CIHAHL) were searched to identify studies employing qualitative and/or quantitative methods. Methodological evaluation was conducted, and findings were integrated in a narrative synthesis. RESULTS: 7521 references were retrieved, 17 articles met the eligibility criteria. Individual needs were classified into the following domains: social needs (2/17: 11.8%), spiritual needs (4/7: 23.5%), practical needs (4/17: 23.5%), daily living needs (5/17: 29.4%), patient-clinician communication (5/17: 29.4%), family-related needs (7/17: 41.2%), physical needs (8/17: 47.1%), psychological emotional needs (9/17: 52.9%), interpersonal/intimacy needs (11/17: 64.7%) and health system/Information needs (13/17: 76.5%). CONCLUSIONS: This systematic review has identified that men can experience a range of unmet supportive care needs with the most frequently reported being needs related to intimacy, informational, physical and psychological needs. Despite the emerging evidence-base, the current with-in study limitations precludes our understanding about how the needs of men evolve over time from diagnosis to living with and beyond prostate cancer. Whether demographic or clinical variables play a moderating role, only remains to be addressed in future studies. This review has made an important contribution by informing clinicians about the complex unmet supportive care needs of men affected by this disease.