A cross-sectional audit of current practices and areas for improvement of distress screening and management in Australian cancer services: is there a will and a way to improve?

BACKGROUND: It is unknown how many distressed patients receive the additional supportive care recommended by Australian evidence-based distress management guidelines. The study identifies the (1) distress screening practices of Australian cancer services; (2) barriers to improving practices; and (3) implementation strategies which are acceptable to service representatives interested in improving screening practices. METHOD: Clinic leads from 220 cancer services were asked to nominate an individual involved in daily patient care to complete a cross-sectional survey on behalf of the service. Questions related to service characteristics; screening and management processes; and implementation barriers. Respondents indicated which implementation strategies were suitable for their health service. RESULTS: A total of 122 representatives participated from 83 services (51%). The majority of respondents were specialist nurses or unit managers (60%). Approximately 38% of representatives' services never or rarely screen; 52% who screen do so for all patients; 55% use clinical interviewing only; and 34% follow referral protocols. The most common perceived barriers were resources to action screening results (74%); lack of time (67%); and lack of staff training (66%). Approximately 65% of representatives were interested in improving practices. Of the 8 implementation strategies, workshops (85%) and educational materials (69%) were commonly selected. Over half (59%) indicated a multicomponent implementation program was preferable. CONCLUSIONS: Although critical gaps across all guideline components were reported, there is a broad support for screening and willingness to improve. Potential improvements include additional services to manage problems identified by screening, more staff time for screening, additional staff training, and use of patient-report measures.

Study Protocol: Evaluation of a DVD intervention designed to meet the informaton needs of patients with head and neck cancer and their partner, carer and families.

BACKGROUND: Patients who undergo surgery for cancer of the head and neck and their families face complex and difficult challenges and are at risk of anxiety and depression and inability to cope with symptom and treatment burden. Information available to support them is not flexible enough to adjust to individual need. DESIGN/METHODS: A randomised clinical trial pre and post intervention design, comparing the use of a tailored DVD intervention, provided preoperatively and used throughout the post- operative period, with usual treatment. One hundred fifty-six individuals or partner couples will be randomly recruited into either the intervention or control group. A survey will be administered at three time points, preoperatively, post operatively and 3 months post-surgery. Anxiety and empowerment are the primary outcome measures. Qualitative data about use of the resource will be gathered by phone interview. DISCUSSION: This is the first study to rigorously evaluate the impact of a DVD intervention for this group of patients and their family members. The study will help to understand the impact of information usage on patient and family well- being and test a means by which to evaluate information and education resources for this and other cancer patient groups. TRIAL REGISTRATION: ACTRN12614001104640 . Date registered: 17/10/2014.

Protocol for a Randomized Controlled Trial of Proactive Web-Based Versus Telephone-Based Information and Support: Can Electronic Platforms Deliver Effective Care for Lung Cancer Patients?

BACKGROUND: Community-based services such as telephone support lines can provide valuable informational, emotional, and practical support for cancer patients via telephone- or Web-based (live chat or email) platforms. However, very little rigorous research has examined the efficacy of such services in improving patient outcomes. OBJECTIVE: This study will determine whether: proactive telephone or Web-delivered support produces outcomes superior to printed information; and Web-delivered support produces outcomes comparable to telephone support. METHODS: A consecutive sample of 501 lung cancer outpatients will be recruited from 50 Australian health services to participate in a patient-randomized controlled trial (RCT). Eligible individuals must: be 18 years or older; have received a lung cancer diagnosis (including mesothelioma) within the previous 4 months; have an approximate life expectancy of at least 6 months; and have Internet access. Participants will be randomly allocated to receive: (1) an information booklet, (2) proactive telephone support, or (3) proactive Web support, chat, and/or email. The primary patient outcomes will be measured by the General Health Questionnaire (GHQ-12) and Health Education and Impact Questionnaire (heiQ) at 3 and 6 months post recruitment. The acceptability of proactive recruitment strategies will also be assessed. RESULTS: It is hypothesized that participants receiving telephone or Web support will report reduced distress (GHQ-12 scores that are 0.3 standard deviations (SD) lower) and greater self-efficacy (heiQ scores that are 0.3 SDs higher) than participants receiving booklets. Individuals receiving Web support will report heiQ scores within 0.29 SDs of individuals receiving telephone support. CONCLUSIONS: If proven effective, electronic approaches such as live-chat and email have the potential to increase the accessibility and continuity of supportive care delivered by community-based services. This evidence may also inform the redesigning of helpline-style services to be effective and responsive to patient needs.

Collaborative Patient-Centered Quality Improvement: A Cross-Sectional Survey Comparing the Types and Numbers of Quality Initiatives Selected by Patients and Health Professionals.

Identification of patients' and health professionals' quality improvement preferences is an essential first step in collaborative improvement models. This includes experience-based codesign (EBCD), where service change is strategically introduced following stakeholder consultation. This study compared the number and types of improvement initiatives selected by outpatients and health professionals. Using electronic surveys designed to inform EBCD studies, 541 outpatients (71.1% consent) and 124 professionals (47.1% response) selected up to 23 general initiatives. On average, outpatients selected 2.4 (median = 1, interquartile range = 1-3) initiatives and professionals selected 10.7 (median = 10; interquartile range = 6-15) initiatives. Outpatients demonstrated a strong preference for improvements to clinic organization, such as appointment scheduling and clinic contact. Outpatients selected relatively fewer initiatives potentially reducing the complexity of service change and resources required to address preferences. Comparatively, professionals indicated a greater degree of change is needed and selected initiatives related to communication with patients and other professionals, including coordinating multidisciplinary care. Improvements to information provision were commonly selected by both groups and offered a strategic opportunity to address patients' and professionals' preferences. By quantifying the ways in which preferences differed, this study emphasizes the need for collaborative approaches to health service change and may be used to initiate an informed discussion on patients' and professionals' quality improvement preferences in tertiary care.

The PACT study protocol: a time series study investigating the impact, acceptability and cost of an integrated model for psychosocial screening, care and treatment of patients with urological and head and neck cancers.

INTRODUCTION: While there is good evidence of the effectiveness of a variety of interventions and services to prevent and/or relieve distress experienced by people affected by cancer, much of this psychosocial morbidity is undetected and untreated, with consequent exacerbated suffering, decreased satisfaction with care, impaired adherence to treatment regimens and poorer morbidity and mortality outcomes. The objective of this study is to develop, implement and assess the impact, acceptability and cost of an integrated, patient-centred Psychosocial Assessment, Care and Treatment (PACT) model of care for patients with urological and head and neck cancers. METHODS AND ANALYSIS: A time series research design will be used to test the PACT model of care, newly introduced in an Australian tertiary hospital. The primary outcome is system-level impact, assessed through audit of patients' medical records and Medicare claims for follow-up care. The secondary outcomes are impact of the model on patients' experience and healthcare professionals' (HCPs) knowledge and confidence, assessed via patient and HCP surveys at baseline and at follow-up. Acceptability of the intervention will be assessed through HCP interviews at follow-up, and cost will be assessed from Medicare and Pharmaceutical Benefits Scheme claims information and information logged pertaining to intervention activities (eg, time spent by the newly appointed psycho-oncology staff in direct patient contact, providing training sessions, engaging in case review) and their associated costs (eg, salaries, training materials and videoconferencing). ETHICS AND DISSEMINATION: Ethics approval was obtained from the Human Research Ethics Committees of Hunter New England Local Health District and the University of NSW. RESULTS: The results will be widely disseminated to the funding body and through peer-reviewed publications, HCP and consumer publications, oncology conferences and meetings. TRIAL REGISTRATION: The study is registered with the Australian New Zealand Clinical Trials Registry with registration number ACTRN12613000916741.

The experiences of head and neck cancer patients requiring major surgery.

BACKGROUND: The prevalence of head and neck cancers is lower (3.5% of total cancers in Australia) than for a number of other cancers. Treatment for head and neck cancer is often drastic and debilitating and patient outcomes are poorer. OBJECTIVE: This qualitative study explored the experiences of cancer patients who underwent surgery for head and neck cancer. METHODS: In-depth face-to-face interviews were conducted with 12 patients 7 to 26 months after surgery. Interviews were thematically analyzed to produce a rich description of patients' experiences from diagnosis through surgery and beyond. RESULTS: Critical aspects of patients' experiences are described through the following themes: only having half the story, shocks and aftershocks, living with the aftermath, and being supported. Participants identified difficulties arising from receiving insufficient, confusing, and often untimely information. The persistent and traumatic nature of what patients endure challenges their physical, mental, and emotional coping capacity and, in some cases, their motivation to live. CONCLUSIONS: There is a need to address gaps in support and education of patients and carers. Of particular concern is the problem related to information provision and comprehension. Critical examination of current practices, together with efforts toward coordinated care tailored to individual needs, is required, along with outreach services for patients in rural areas. IMPLICATIONS FOR PRACTICE: The development and evaluation of targeted resources in a variety of forms such as DVD, Internet, and pamphlets are needed. Robust assessment strategies are required to inform supportive interventions matched to stages and significant events in patients' journeys.