Building capacity for palliative care delivery in primary care settings: Mixed-methods evaluation of the INTEGRATE Project.

OBJECTIVE: To evaluate an intervention aimed at building capacity to deliver palliative care in primary care settings. DESIGN: The INTEGRATE Project was a 3-year pilot project involving interprofessional palliative care education and an integrated care model to promote early identification and support of patients with palliative care needs. A concurrent mixed-methods evaluation was conducted using descriptive data, provider surveys before and after implementation, and interviews with providers and managers. SETTING: Four primary care practices in Ontario. PARTICIPANTS: All providers in each practice were invited to participate. Providers used the "surprise question" as a prompt to determine patient eligibility for inclusion. MAIN OUTCOME MEASURES: Provider attitudes toward and confidence in providing palliative care, use of palliative care tools, delivery of palliative care, and perceived barriers to delivering palliative care. RESULTS: A total of 294 patients were identified for early initiation of palliative care, most of whom had multiple comorbid conditions. Results demonstrated improvement in provider confidence to deliver palliative care (30% mean increase, P < .05) and self-reported use of palliative care tools and services (25% mean increase, P < .05). There was substantial variation across practices regarding the percentage of patients identified using the surprise question (0.2% to 1.5%), the number of advance care planning conversations initiated (50% to 90%), and mean time to conversation (13 to 76 days). This variation is attributable, in part, to contextual differences across practices. CONCLUSION: A standardized model for the early introduction of palliative care to patients can be integrated into the routine practice of primary care practitioners with appropriate training and support. Additional research is needed to understand the practice factors that contribute to the success of palliative care interventions in primary care and to examine patient outcomes.

Do family health clinics provide primary-level palliative care in Ontario and the eastern regions of Quebec?

OBJECTIVE: To explore the extent to which family health clinics in Ontario and the eastern regions of the province of Quebec provide palliative care. DESIGN: A cross-sectional survey. SETTING: Ontario and the eastern regions of Quebec. PARTICIPANTS: The clinic leads of a select group of family health clinics with patient enrolment models in Ontario and the eastern regions of Quebec. MAIN OUTCOME MEASURES: The types of palliative care services that the clinics provide, as well as the enablers of and barriers to providing palliative care within the 2 provinces. RESULTS: The overall response rate was 32%. Clinics in both provinces reported providing palliative care to ambulatory patients (83% of Ontario clinics and 74% of Quebec clinics). Only 29 of 102 (28%) Ontario clinics provided on-call services themselves, compared with 31 of 34 (91%) Quebec clinics, with the resulting effect being that more patients were directed to emergency departments in Ontario. Access to palliative care specialist teams for support was higher in Ontario than in Quebec (67% vs 41%, respectively). In Ontario, 56% of practices indicated that they had access to palliative care physicians who could take over the care of their patients with palliative care needs, but a lower number (44%) actually handed over care to these physicians. CONCLUSION: A group of clinics are providing full palliative care services to their own patients with palliative care needs, including "on-call" services and home visits, and these serve as role models. In Ontario in particular, substantial gaps still exist with respect to clinics providing their own after-hours coverage and home visits; many rely on other services to provide that care. In Quebec, lack of access to palliative care specialist teams appears to be a key challenge in the areas included in this survey. This survey could help policy makers and funders of health care services ensure that appropriate conditions are put in place for optimal palliative care provision in these clinics, such as coordinating access to on-call coverage and support from palliative care specialist teams, as well as providing education to all physicians and adequate remuneration.

Managing skin toxicities related to panitumumab.

BACKGROUND: Dermatologic toxicities from targeted agents such as panitumumab can interfere with cancer treatment. OBJECTIVE: We sought to evaluate the rash assessment and management in a consecutive patient cohort who received panitumumab for colorectal cancer treatment. METHODS: This was a retrospective chart review. RESULTS: Skin toxicity, consisting of papulopustular rash, was experienced by 32 of 34 patients. The majority (85%) developed the rash by the end of the second infusion cycle. Patients presented with a mild (41%), moderate (38%), and severe (21%) rash, and progressed to an extensive rash without appropriate treatment. A grading system was used for 65% of patients to document severity. LIMITATIONS: Small sample size limited power in analysis. Rash severity had to be inferred based on rash description and management in 11 of the patients. CONCLUSION: Dermatologic toxicities related to panitumumab are common; however, the way they are reported and managed varies among physicians. To prevent progression, toxicities must be assessed and treated early and aggressively, according to severity grading. Dermatologists could aid oncologists in choosing the best management strategies.

Getting back on track: evaluation of a brief group psychoeducation intervention for women completing primary treatment for breast cancer.

OBJECTIVE: Patients with breast cancer experience unmet informational and psychosocial needs at the end of treatment. A brief psychoeducational intervention delivered at this transition may help to address some of the challenges these women face. The purpose of this study was to test the effectiveness of a single-session group psychoeducational intervention (GBOT group) compared with standard print material (usual care). METHODS: In this randomized controlled trial, 442 patients with breast cancer who were completing their adjuvant radiotherapy were recruited and randomized to receive either usual care, which includes standard print material (CRL group n = 226) or usual care and the GBOT group intervention (INT group n = 216). Participants completed measures at baseline and again at 3 and 6 months post-intervention. RESULTS: The INT group showed significant improvement in their knowledge regarding the re-entry transition period (d = 0.31) and in their feelings of preparedness for re-entry (d = 0.37). There were no differences between the groups over time on health-related distress or mood. CONCLUSIONS: Results support the effectiveness of providing a single-session group psychoeducational intervention as a first-step approach to supportive care for women at the end of breast cancer treatment.

A couple-based intervention for patients and caregivers facing end-stage cancer: outcomes of a randomized controlled trial.

BACKGROUND: We evaluated the effect of Emotionally Focused Therapy (EFT) [intervention (INT)], modified for the advanced cancer population versus standard care [control (CTL)], on marital functioning and psychosocial outcomes among distressed couples. EFT examines the ways couples process patterns of interaction, facilitating change. METHODS: Forty-two patients with metastatic cancer and their caregivers were assigned randomly to receive eight sessions of EFT delivered by one EFT-trained psychologist or standard care provided by multidisciplinary clinicians. Partners completed measures of marital functioning, depression, hopelessness, empathic caregiving (patient), and caregiver burden (caregiver) before randomization at baseline (T0), post-intervention (T1), and 3-month post-intervention (T2). Data were analyzed using three-way analyses of covariance; main effects were treatment, patient status, and sex. Multilevel modeling was also employed. RESULTS: At T1, INT group led to significant improvement in marital functioning (p ≤ 0.0001) and patients' experience of caregiver empathic care (p = 0.02) versus CTL group. Effect sizes for these differences were in the large range (d = 1.00). In both groups, patients showed a marginally higher mean score for marital functioning compared with caregivers [INT: M = 56.3, standard deviation (SD) = 4.6 vs M = 54.3, SD = 4.5; CTL group: M = 43.4, SD = 10.3 vs M = 42.4, SD = 6.8, respectively]. At T2, results were maintained. CONCLUSIONS: The effectiveness of and adherence to the EFT couple intervention for patients facing advanced cancer were demonstrated in this study. Larger randomized control trials are needed to confirm these findings. Qualitative studies may help to further understand the mechanism by which such an intervention may act.

Helping Her Heal-Group: a pilot study to evaluate a group delivered educational intervention for male spouses of women with breast cancer.

BACKGROUND: Distress in husbands of women with early-stage breast cancer may be equivalent to or even higher than their wives. Husbands often struggle to help and support their wives cope with the illness and its treatment. In response, we developed a five-session group educational counselling intervention (Helping Her Heal-Group (HHH-G)) for husbands of women with early-stage breast cancer. The primary aim of the current pilot study was to determine the acceptability and feasibility of HHH-G and to obtain a preliminary estimate of its impact on participating men's skills, self-confidence and self care. Secondary aims were to assess the impact of the intervention on both the participating spouses' and wives' ratings of marital quality and depressed mood. METHODS: The study employed a one-arm, pre-post-intervention design whereby participating men (n=54) and their wives (n=54) independently completed measures at baseline (T0), immediately following the last session (T1) and 3 months after the last session (T2). RESULTS: Overall, there was very high study retention (87%). On the basis of the questionnaire data, we found significant improvements in spouses' self-efficacy (p<0.001) and self-reported skills including wife support (p=0.003) and self-care (p<0.001). In addition, there was a significant improvement in wives' mood scores (p=0.003). Post-intervention interviews support acceptability and impact of the HHH-G intervention, and provide support for the group format of the program. CONCLUSIONS: The feasibility and acceptability of HHH-G was supported, and treatment outcomes suggest the potential benefits of the intervention. Phase III evaluation of HHH-G program is warranted.

Understanding the needs of colorectal cancer patients during the pre-diagnosis phase.

Patients with colorectal cancer (CRC) face a number of challenges leading up to diagnosis; however, research is limited regarding their specific needs during the pre-diagnosis period. A multicenter cross-sectional survey was conducted to elicit information about the CRC experience during the pre-diagnosis phase. Across the three sites, 104 eligible patients were approached, and 82 patients completed the survey, for a total response rate of 78.9%. The needs most identified by participants during the pre-diagnosis period were informational (31.6%) and emotional (20.3%) needs; social needs were rated as the least important need for these patients (7%). The majority (84.0%) reported that these needs were met. Participants reported feeling shocked or overwhelmed on learning of their diagnosis (57.1%) and high levels of anxiety during this time (40.0%). The majority (77.9%) of participants reported that they were not directed to any resources to help address their anxiety. Informational and emotional needs are identified as the most important needs during the pre-diagnosis phase, and for most these needs are being met; however, some participants are experiencing high levels of anxiety without access to appropriate resources. Further work is required to understand the optimal mechanisms to address identified needs during this pre-diagnosis period and to assess the potential benefits and costs of addressing these needs.

Experiences of care delivery: endometrial cancer survivors at end of treatment.

OBJECTIVES: To gain a better understanding of the experiences of endometrial cancer patients at the transition from acute cancer treatment to well follow up care. METHODS: Cross-sectional mixed methods (survey and focus groups) study to examine and describe endometrial cancer survivor's experience of the transition to survivorship including their knowledge of survivorship issues, feeling of preparedness, health related distress and perspectives on care delivery and end of treatment transitions. RESULTS: Survey data (n=169) and focus group data (n=14) suggests that a large majority of endometrial cancer survivors are not provided with any formal transition planning or documentation and as a result feel ill-prepared for the post treatment phase of survivorship. The majority of women in this study reported that they were not aware of their risk for recurrence or how to monitor for this and they were not provided with clear information in this regard. They were also unsure of the health risks and long-term and late effects of cancer and how to find information about them and resources to manage them. A substantial minority (30-40%) of women continued to be frustrated and discouraged by their health problems. Few participants had been told about the resources and supports that are available to them and their families/friends or were not provided with any information about self-management tools or education that could be helpful for them in their recovery. CONCLUSIONS: Both the quantitative and qualitative results in our study suggest that quality of care for endometrial cancer survivors must begin to shift from a purely disease-focused approach to a wellness-centered approach that provides coordinated, patient-centered, comprehensive care and more formalized transition care planning.

Understanding the needs of lung cancer patients during the pre-diagnosis phase.

Patients with lung cancer have numerous and varying needs spanning across the cancer trajectory; however, only limited research has focused specifically on the pre-diagnosis phase. A multicentre cross-sectional survey was conducted to explore the experience of lung cancer patients during the pre-diagnosis phase. High levels of anxiety were reported by many participants (45.6 %). Informational (32.1 %), and emotional (24.1 %) needs were reported as most important; the majority (89.0 %) reported these needs were met. Most participants sought information throughout, with many (38.6 %) rating their oncology health care providers to be the best source of information. The majority (70.0 %) reported that they were not directed to any resources to help address their anxiety. During pre-diagnosis, informational and emotional needs appear most important, and for the majority, these were reportedly met. Although many experienced high levels of anxiety, few were directed to resources to address it.

Examination of couples' attachment security in relation to depression and hopelessness in maritally distressed patients facing end-stage cancer and their spouse caregivers: a buffer or facilitator of psychosocial distress?

PURPOSE: The purpose of this study is to determine levels of depression and hopelessness and to explore the relationship between attachment security and psychosocial distress in patients with metastatic/recurrent cancer and spouse-caregivers, experiencing marital distress. METHODS: Couple-participants were from a pilot study and a larger clinical trial prior to randomization. Participation required that one partner endorsed marital distress on the Revised Dyadic Adjustment Scale (RDAS). Outcome measures included the Beck Depression Inventory-II (BDI-II), Beck Hopelessness Scale (BHS), and Experiences in Close Relationships Inventory. RESULTS: Caregivers, compared with their matched ill-partners, had significantly higher scores on the RDAS (distressed). CONCLUSIONS: Marital distress may be amplified within insecure attachment bonds, especially among avoidant male patients and their female caregivers, which may influence caregiving/care-receiving. We offer unique, preliminary support for identifying couples at risk to help reduce suffering and complicated bereavement in the terminal cancer population. Further research that include larger studies, are needed to determine relationships among attachment and psychosocial outcomes.

Self-efficacy, perceived preparedness, and psychological distress in women completing primary treatment for breast cancer.

The present analyses were conducted to examine demographic and clinical variables associated with mood and health-related distress in a sample of 440 women completing primary treatment for early-stage breast cancer. The authors' aim was to test the hypothesis that higher levels of self-efficacy and perceived preparedness for the end of treatment--the reentry phase--are associated with better mood and lower health-related distress in this sample. Women who had received chemotherapy and who were younger (<50 years) had significantly higher mood disturbance and health-related distress scores. Younger age, preparedness, and self-efficacy predicted 36% of the variance in mood disturbance scores. Self-efficacy and age predicted 26% of the variance in health-related distress. Although further research is needed, our findings suggest that self-efficacy and perceived preparedness represent important constructs to target in the development of interventions for women at the reentry transition.

The role of a clinician-led reflective interview on improving self-efficacy in breast cancer survivors: a pilot study.

Breast cancer survivors experience a wide range of survivorship issues that are not always adequately addressed. This study is an assessment of the Survivorship Consult (SC), a one-to-one clinician-led reflective interview used to capture a comprehensive summary of the survivor experience, to determine its impact on self-efficacy and the perceived likelihood that it initiates behavior change. Using a pre-test/post-test design, data were collected from participants (N = 40) using validated instruments and opened-ended questions to evaluate the SC. Participants found the SC to be a useful tool for planning and goal setting and improved self-efficacy as measured by the Cancer Behavior Inventory with an increase of 2.0 (p = 0.03). The SC demonstrates promise in improving the ability and confidence of breast cancer survivors to manage their care, but further research is required to understand the optimal implementation of this intervention and its impact on the delivery of survivorship services.

mHOMR: a feasibility study of an automated system for identifying inpatients having an elevated risk of 1-year mortality.

OBJECTIVE: The need for clinical staff to reliably identify patients with a shortened life expectancy is an obstacle to improving palliative and end-of-life care. We developed and evaluated the feasibility of an automated tool to identify patients with a high risk of death in the next year to prompt treating physicians to consider a palliative approach and reduce the identification burden faced by clinical staff. METHODS: Two-phase feasibility study conducted at two quaternary healthcare facilities in Toronto, Canada. We modified the Hospitalised-patient One-year Mortality Risk (HOMR) score, which identifies patients having an elevated 1-year mortality risk, to use only data available at the time of admission. An application prompted the admitting team when patients had an elevated mortality risk and suggested a palliative approach. The incidences of goals of care discussions and/or palliative care consultation were abstracted from medical records. RESULTS: Our model (C-statistic=0.89) was found to be similarly accurate to the original HOMR score and identified 15.8% and 12.2% of admitted patients at Sites 1 and 2, respectively. Of 400 patients included, the most common indications for admission included a frailty condition (219, 55%), chronic organ failure (91, 23%) and cancer (78, 20%). At Site 1 (integrated notification), patients with the notification were significantly more likely to have a discussion about goals of care and/or palliative care consultation (35% vs 20%, p = 0.016). At Site 2 (electronic mail), there was no significant difference (45% vs 53%, p = 0.322). CONCLUSIONS: Our application is an accurate, feasible and timely identification tool for patients at elevated risk of death in the next year and may be effective for improving palliative and end-of-life care.

Provider Tools for Advance Care Planning and Goals of Care Discussions: A Systematic Review.

BACKGROUND: Advance care planning and goals of care discussions involve the exploration of what is most important to a person, including their values and beliefs in preparation for health-care decision-making. Advance care planning conversations focus on planning for future health care, ensuring that an incapable person's wishes are known and can guide the person's substitute decision maker for future decision-making. Goals of care discussions focus on preparing for current decision-making by ensuring the person's goals guide this process. AIM: To provide evidence regarding tools and/or practices available for use by health-care providers to effectively facilitate advance care planning conversations and/or goals of care discussions. DATA SOURCES: A systematic review was conducted focusing on guidelines, randomized trials, comparative studies, and noncomparative studies. Databases searched included MEDLINE, EMBASE, and the proceedings of the International Advance Care Planning Conference and the American Society of Clinical Oncology Palliative Care Symposium. CONCLUSIONS: Although several studies report positive findings, there is a lack of consistent patient outcome evidence to support any one clinical tool for use in advance care planning or goals of care discussions. Effective advance care planning conversations at both the population and the individual level require provider education and communication skill development, standardized and accessible documentation, quality improvement initiatives, and system-wide coordination to impact the population level. There is a need for research focused on goals of care discussions, to clarify the purpose and expected outcomes of these discussions, and to clearly differentiate goals of care from advance care planning.

Exploring quality of life among the elderly in Hai Duong province, Vietnam: a rural-urban dialogue.

BACKGROUND: Quality of life (QoL) is an important health index for the elderly, necessary for assessing interventions, and prioritising medical and social care needs. As the ageing population in Vietnam continues to increase, understanding important dimensions of QoL for the elderly is essential. There is a paucity of research in this area, however, and the available literature focuses on functional capacities. The purpose of this article is to explore perceptions on the dimensions of QoL among the elderly in Vietnam, to use these perceptions to broaden the concept, and to explore similarities and differences between those living in urban compared to rural areas. METHOD: Qualitative methods included in-depth interviews (IDI) with experts in ageing and elderly persons, as well as focus group discussions (FGDs) in three communes in Hai Duong province. IDIs and FGDs were recorded and transcribed. NVivo software was used to analyse the data. RESULTS: Thematic analysis identified physical, psychological, social, environmental, religious, and economic as important dimensions of QoL. For elderly participants in both urban and rural areas, physical health, social relations, finances and economics, the physical and social environment, and psychological health were reported as important. Rural participants also identified religious practice as an important dimension of QoL. In terms of relationships, the elderly in urban areas prioritised those with their children, while the elderly in rural areas focussed their concerns on community relationships and economic conditions. CONCLUSION: Isolating individual factors that contribute to QoL among the elderly is difficult given the inter-relations and rich cross-linkages between themes. Elderly participants in urban and rural areas broadly shared perspectives on the themes identified, in particular social relationships, but their experiences diverged around issues surrounding finances and economics, their respective physical and social environments, and the contribution of religious practice. The study findings may help provide guidance for the development of a socially and culturally relevant instrument for measuring QoL among the elderly in Vietnam. The results will also be useful for developing policies and interventions that are responsive to the needs of the elderly, and reflect the themes perceived to be important.

Maximizing your Patient Education Skills (MPES): a multi-site evaluation of an innovative patient education skills training course for oncology health care professionals.

OBJECTIVE: To evaluate the acceptability and relevance of the Maximizing your Patient Education Skills (MPES) course and to determine whether it significantly improved knowledge regarding patient education (PE) theory, self-assessed PE competencies, and PE skills using case based vignettes. METHODS: 1-Group, multi-site, pre-post-intervention. Participants completed a pre-assessment (T1), participated in the 4-h MPES course, and then a 3-month post-assessment (T2). A focus group was conducted with sub-set of participants. RESULTS: 98 (75%) of participants completed both time points. Participants were highly satisfied with MPES and found it to be relevant. Results showed that MPES had a significant impact on all of our outcome measures. CONCLUSION: Findings from this study show that oncology HCPs knowledge of patient education theory, self-assessed competencies and skills can improve after participating in a brief problem-focused and interactive workshop. PRACTICE IMPLICATIONS: Given the evidence that well-planned education and support can contribute to a number of positive health outcomes and the evidence that HCPs may lack the skills to teach and support patients and their families effectively, these results suggest that MPES course may be of value to oncology professionals. Efforts to further develop this course include exploring alternative funding models and using different learning platforms.