Concordance Between Self-Reported Completion of Advance Care Planning Documentation and Availability of Documentation in Australian Health and Residential Aged Care Services.

CONTEXT: Advance care planning (ACP) documentation needs to be available at the point of care to guide and inform medical treatment decision-making. OBJECTIVE: To examine concordance between self-reported completion of ACP documentation and self-reported storage of the documentation at the person's current point of care with the availability of the documentation in that person's health record. METHODS: A national multicenter audit of health records and a self-report survey of eligible audit participants in 51 Australian health and residential aged care services. The audit assessed availability of ACP documentation in the health record, whereas the survey assessed self-reported completion and storage of the ACP documentation at the person's current place of care. To ascertain concordance, survey and audit data were cross-tabulated and concordance rates and kappa statistics were calculated overall and by health care sector and ACP documentation type. RESULTS: The audit included 2285 people, of whom 1082 were eligible for the survey. Of 507 who completed the survey (response rate = 47%), 272 (54%) reported completing ACP documentation, of whom 130 (48%) had documentation identified in the audit. Conversely, 39 of 235 people (17%) who reported not completing ACP documentation had documentation identified (concordance rate = 64%; κ = 0.303, P < .001). The concordance rate increased to 79% when self-reported storage of ACP documentation at the person's current point of care was compared with the existence of the document in their health record (κ = 0.510, P < .001). Concordance varied by health care setting and type of ACP documentation. CONCLUSION: Discrepancies exist between self-reported completion of ACP documentation and the presence of these documents in the health records of older adults, representing a significant patient safety issue. Public education campaigns and improvements to systems for document storage and accessibility are required to support person-centered medical and end-of-life care.

Understanding how cancer patients actualise, relinquish, and reject advance care planning: implications for practice.

PURPOSE: Although advance care planning (ACP) is recognised as integral to quality cancer care, it remains poorly integrated in many settings. Given cancer patients' unpredictable disease trajectories and equivocal treatment options, a disease-specific ACP model may be necessary. This study examines how Australian cancer patients consider ACP. Responses will inform the development of an Australian Cancer Centre's ACP programme. METHODS: A constructivist research approach with grounded theory design was applied. Eighteen adults from lung and gastro-intestinal tumour streams participated. Participants first described their initial understanding of ACP, received ACP information, and finally completed a semi-structured interview assisted by the vignette technique. Qualitative inter-rater reliability was integrated. RESULTS: Participants initially had scant knowledge of ACP. On obtaining further information, their responses indicated that: For cancer patients, ACP is an individualised, dynamic, and shared process characterised by myriad variations in choices to actualise, relinquish, and/or reject its individual components (medical enduring power of attorney, statement of choices, refusal of treatment certificate, and advanced directive). Actualisation of each component involves considering, possibly conversing about, planning, and communicating a decision, usually iteratively. Reactions can change over time and are informed by values, memories, personalities, health perceptions, appreciation of prognoses, and trust or doubts in their substitute decision makers. CONCLUSION: Findings endorse the value of routinely, though sensitively, discussing ACP with cancer patients at various time points across their disease trajectory. Nonetheless, ACP may also be relinquished or rejected and ongoing offers for ACP in some patients may be offensive to their value system.

A longitudinal study of distress (depression and anxiety) up to 18 months after radiotherapy for head and neck cancer.

OBJECTIVE: The aim of the study was to assess symptoms of depression and anxiety in patients with head and neck cancer up to 18 months after radiotherapy. METHODS: Prospective observational study of consecutive head and neck outpatients was conducted at a tertiary cancer centre (n = 101). Eligibility included diagnosis of cancer in the head and neck region, where the patient agreed to radiotherapy with curative intent. Data were collected before commencement of radiotherapy and 3 weeks and 18 months after completion. Symptoms of depression and anxiety were assessed by the Hospital Anxiety and Depression Scale. Tumour/treatment-related physical symptoms were assessed using the 'Additional Concerns' subscale of the Functional Assessment of Chronic Illness Therapy for Head and Neck Cancer. RESULTS: The prevalence of identified probable cases of depression was 15% at baseline, increasing to 29% 3 weeks post-treatment, falling to 8% at 18-month follow-up. The number of probable cases of anxiety was 20% at baseline, 17% at 3 weeks post-treatment and 22% at 18-month follow-up. Depression scores significantly increased from baseline to 3 weeks post-treatment and decreased at 18-month follow-up. Variability in depression scores was accounted for by tumour/treatment-related physical symptoms. Anxiety scores significantly decreased between baseline and 3-week post-treatment and increased at 18-month follow-up. Younger age and more tumour/treatment-related physical symptoms predicted anxiety scores. CONCLUSIONS: The rates of depression in head and neck cancer patients increase following cancer treatment and are related to tumour/treatment-related physical symptoms. Anxiety levels are higher pre-treatment, lower immediately following cancer treatment but rise to near pre-treatment levels more than a year after completion of cancer treatment.

Depression and cancer.

Depression in patients with cancer can present a challenging clinical problem for both general practitioners and the oncology team. Detecting depression in a patient with cancer, who may be debilitated and in pain, can be difficult. Cancer treatments can complicate antidepressant choices. Community-based psychologists are an important resource for helping manage less complex and less severe psychological problems that can arise in the cancer setting. Specialist psycho-oncology services (where available) can help with more complex and severe presentations of depression by advising on the prescription of antidepressants and providing psychotherapy programs that address the patient's psychological orientation and needs and consider the patient's cancer type and stage.

The practical challenges of recruitment and retention when providing psychotherapy to advanced breast cancer patients.

GOALS OF WORK: The goal of the present study was to investigate recruitment issues relevant to psychotherapy trials for metastatic cancer patients. First, we undertook a literature review of the psychotherapy intervention research for metastatic cancer patients. Second, we piloted pragmatic recruitment methods for a couples' intervention for women with metastatic breast cancer and their partners. METHODS: An extensive literature search was conducted to identify psychotherapy trials involving people with metastatic cancer published in peer-reviewed journals. Study characteristics and recruitment methodologies were examined. In the pilot study, we trialled the recruitment strategies of approaching participants at outpatients' appointments, via letter, referral from the treating team and through direct advertising using two community support services. RESULTS: The literature search identified 1,905 potentially relevant articles, which were narrowed to 18 studies specifically involving metastatic cancer patients involving a professionally trained facilitator and a specified theoretical orientation. Limited information was found on recruitment rates and the success of recruitment strategies. Barriers to recruitment identified in the literature included degree of patient illness, lack of interest/perceived benefit, insufficient time, socio-demographic factors and negative clinician attitudes. Our pilot study identified 72 eligible couples of which 66 were approached. Our recruitment strategies resulted in six couples consenting (9.1%) but only three couples completing the study (4.5%). The main reasons for study refusal were the intervention was not needed, lack of interest, insufficient time, patient illness and travel distance. CONCLUSIONS: Recruitment for couple-based psychotherapy interventions is challenging. More work is required on developing acceptable and feasible recruitment processes for metastatic cancer patients to be able to access support.

Psychological distress (depression and anxiety) in people with head and neck cancers.

OBJECTIVE: To assess symptoms of depression and anxiety in patients with head and neck cancers (HNCs) before and after radiotherapy. DESIGN, PARTICIPANTS AND SETTING: Prospective observational study of 102 outpatients with HNCs at a tertiary cancer centre in Melbourne between 1 May 2008 and 30 May 2009. Eligibility criteria were a first-time diagnosis of HNC, age over 17 years, and agreement to undergo cancer treatment involving radiotherapy with curative intent. Data were collected before commencement of radiotherapy and again 3 weeks after completing treatment. MAIN OUTCOME MEASURES: Symptoms of depression and anxiety as assessed by the Hospital Anxiety and Depression Scale (HADS); physical and psychosocial aspects of quality of life as assessed by the Functional Assessment of Cancer Therapy-Head and Neck (FACT-H&N). RESULTS: Seventy-five participants completed pretreatment and posttreatment questionnaires. Mean depression scores increased significantly from before to after treatment, while anxiety scores decreased significantly over the same period. The prevalence of mild to severe depression was 15% before treatment and 31% after treatment. The prevalence of mild to severe symptoms of anxiety was 30% before treatment, reducing to 17% after treatment. Posttreatment depression was predicted by pretreatment depression and receiving chemotherapy. Posttreatment anxiety was predicted by pretreatment anxiety and male sex. CONCLUSIONS: These findings suggest that rates of depression in patients with HNCs increase after cancer treatment, with a third of patients experiencing clinically significant symptoms of depression after radiotherapy.

Development of a psychoeducational intervention for men with prostate cancer.

This study aimed to develop and implement a nurse-led psychoeducational group program for men receiving radiotherapy for prostate cancer. These groups are part of a larger multidisciplinary care intervention, which is designed to enhance patient involvement in care. The manual for the groups was developed using a literature review and expert opinion from a multidisciplinary team consisting of radiation oncologists, urology nurses, behavioral scientists, psychologists, radiation therapists, and consumers. The group was pilot tested with 10 participants and further refined based on patient and facilitator feedback. The final program consisted of four, 1-hour, psychoeducational group sessions, with modules covering anatomy, treatment side effects, physical/lifestyle/ emotional impacts of prostate cancer, sexuality and communication, and survivorship delivered at pretreatment, midtreatment, end of treatment, and posttreatment. The modular design of this intervention is innovative in that men in the group can collectively nominate which modules they wish to focus on. Feedback from patients and facilitators was positive with minimal changes made to the manual, apart from session 4 that required expansion to permit group members to have greater choice over the content. Participants endorsed the psychoeducational groups as being useful, an appropriate length, and addressing their issues of concern. Further testing of the psychoeducational groups is currently being undertaken as part of a larger randomized controlled trial of the multidisciplinary care intervention.

Unmet needs in cancer patients: development of a supportive needs screening tool (SNST).

GOALS OF WORK: A diagnosis of cancer can have a profound impact on the physical, emotional, psychological, social and spiritual areas of a person's life. Supportive care services are directed towards this full range of issues associated with cancer. Identification of need is the first step in meeting supportive care concerns, but there is a lack of tools and processes regularly used in clinical practice. This article reports the first steps in the development of a supportive needs screening tool appropriate for use in an oncology outpatient setting. MATERIALS AND METHODS: A review of the literature was undertaken, and a draft tool developed using a process of item reduction. A small pre-test followed by a pilot test with 87 patients attending Peter MacCallum Cancer Centre, Melbourne Australia was undertaken. Evaluation to identify usability and acceptability in clinical practice included descriptive statistics to profile patient needs and referrals generated by the supportive needs screening tool (SNST), interviews with a small sample of participants and surveys completed by staff. MAIN RESULTS: The SNST was developed with 41 questions, the majority requiring a yes/no response. From the tool, a total of 1,085 needs were identified (mean = 12 needs/patient). A total of 264 referrals were generated, with 72% of patients receiving at least one referral. Patients and staff reported high acceptability. CONCLUSIONS: The SNST has face validity and demonstrated usability in an ambulatory care oncology stetting, as first steps in instrument development. Further testing of reliability and validity are being undertaken.

Survivorship issues following treatment completion--results from focus groups with Australian cancer survivors and health professionals.

BACKGROUND: The number of cancer survivors is increasing dramatically. Many survivors report long-term psychosocial, physical and other consequences. To understand the issues faced by Australian cancer survivors we conducted focus groups with cancer patients and health professionals. METHODS: Patients were identified through a peer support program at a major cancer treatment center (Peter Mac). Health professionals were also recruited from Peter Mac. Focus groups followed a semi-structured format based on themes identified from the literature. Questions focused on treatment completion, and 1 year post-treatment. Participants were also asked to suggest solutions to address identified issues. Focus groups were taped, transcribed, cross-checked for accuracy, and analyzed independently. RESULTS: The most common needs (in terms of both frequency and intensity) reported at treatment completion by both survivors and professionals were dealing with fatigue, anxiety about cancer recurrence, others expecting you to be back to normal, having to create new expectations about physical ability, and anxiety about leaving the hospital system. The most common needs at 1 year were anxiety about check-ups and results, and going into early menopause. The most frequently suggested ways of meeting these perceived needs were reassuring survivors the way they feel is normal and putting them in contact with others who have been through the same experience. DISCUSSION: There was a high level of congruence in the themes identified by survivors and health professionals. IMPLICATIONS FOR CANCER SURVIVORS: These results provide a clear direction for the development of resources to support cancer survivors following treatment completion.