Conversations for providers caring for patients with rectal cancer: Comparison of long‐term patient‐centered outcomes for patients with low rectal cancer facing ostomy or sphincter‐sparing surgery

For some patients with low rectal cancer, ostomy (with elimination into a pouch) may be the only realistic surgical option. However, some patients have a choice between ostomy and sphincter‐sparing surgery. Sphincter‐sparing surgery has been preferred over ostomy because it offers preservation of normal bowel function. However, this surgery can cause incontinence and bowel dysfunction. Increasingly, it has become evident that certain patients who are eligible for sphincter‐sparing surgery may not be well served by the surgery, and construction of an ostomy may be better. No validated assessment tool or decision aid has been published to help newly diagnosed patients decide between the two surgeries or to help physicians elicit long‐term surgical outcomes. Furthermore, comparison of long‐term outcomes and late effects after the two surgeries has not been synthesized. Therefore, this systematic review summarizes controlled studies that compared long‐term survivorship outcomes between these two surgical groups. The goals are: 1) to improve understanding and shared decision‐making among surgeons, oncologists, primary care providers, patients, and caregivers; 2) to increase the patient's participation in the decision; 3) to alert the primary care provider to patient challenges that could be addressed by provider attention and intervention; and 4) ultimately, to improve patients' long‐term quality of life. This report includes discussion points for health care providers to use with their patients during initial discussions of ostomy and sphincter‐sparing surgery as well as questions to ask during follow‐up examinations to ascertain any long‐term challenges facing the patient. CA Cancer J Clin 2016;66:387–397. © 2016 American Cancer Society.     

Cancer patients' trust in their physician-a review

Objective: Patient's trust in their physician is crucial for desirable treatment outcomes such as satisfaction and adherence. In oncology, trust is possibly even more essential, due to the life‐threatening nature of cancer. A review was undertaken of the current knowledge of the conceptualization, assessment, correlates, and consequences of cancer patients' trust in their physician. Methods: The empirical literature published in peer‐reviewed journals between October 1988 and October 2008 was searched, employing all combinations and variations of the following keywords: trust, physician–patient relations, and cancer. Results: The search identified 45 relevant papers, only 11 of which drew attention to the conceptualization of trust, and 5 of which focused on trust as the primary subject of interest. Trust in physicians was strong overall. Patients' trust appeared to be enhanced by the physician's perceived technical competence, honesty, and patient‐centred behaviour. A trusting relationship between patient and physician resulted in facilitated communication and medical decision making, a decrease of patient fear, and better treatment adherence. Conclusions: A lack of focus on trust and the conceptualization thereof, strong methodological variations between studies and a possible publication bias lead us to conclude that cancer patients' trust in their physician deserves more systematic, theoretically based, research attention. Consequently, studies are needed aimed at gaining a thorough understanding of the nature and impact of cancer patients' trust in their physician, and how the interaction between physician and patient may contribute to such trust. Copyright © 2010 John Wiley & Sons, Ltd.     

Developing an aftercare decision aid; assessing health professionals' and patients' preferences

Personalising aftercare for curatively treated breast cancer patients is expected to improve patient satisfaction with care. A patient decision aid can support women in making decisions about their aftercare trajectory, but is currently not available. The aim of this study was to assess the needs of patients and health professionals with regard to an aftercare decision aid to systematically develop such a decision aid. Focus groups with patients and individual interviews with health professionals were digitally recorded and coded using the Framework analysis. Although most patients felt few aftercare options were available to them, health professionals reported to provide various options on the patients' request. Patients reported difficulty in expressing their need for options to their health professional. Although most patients were unfamiliar with decision aids, the majority preferred a paper‐based patient decision aid, while most health professionals preferred an online tool. The practical implications for the intended patient decision aid are: that a digital tool with paper‐based element should be developed, the patient decision aid should facilitate both rational and intuitive processes and should provide insight in patients' preferences concerning aftercare to discuss these explicitly.     

Patient navigation: State of the art or is it science?

First implemented in 1990, patient navigation interventions are emerging today as an approach to reduce cancer disparities. However, there is lack of consensus about how patient navigation is defined, what patient navigators do, and what their qualifications should be. Little is known about the efficacy and cost-effectiveness of patient navigation. For this review, the authors conducted a qualitative synthesis of published literature on cancer patient navigation. By using the keywords 'navigator' or 'navigation' and 'cancer,' 45 articles were identified in the PubMed database and from reference searches that were published or in press through October 2007. Sixteen studies provided data on the efficacy of navigation in improving timeliness and receipt of cancer screening, diagnostic follow-up care, and treatment. Patient navigation services were defined and differentiated from other outreach services. Overall, there was evidence of some degree of efficacy for patient navigation in increasing participation in cancer screening and adherence to diagnostic follow-up care after the detection of an abnormality. The reported increases in screening ranged from 10.8% to 17.1%, and increases in adherence to diagnostic follow-up care ranged from 21% to 29.2% compared with control patients. There was less evidence regarding the efficacy of patient navigation in reducing either late-stage cancer diagnosis or delays in the initiation of cancer treatment or improving outcomes during cancer survivorship. There were methodological limitations in most studies, such as a lack of control groups, small sample sizes, and contamination with other interventions. Although cancer-related patient navigation interventions are being adopted increasingly across the United States and Canada, further research will be necessary to evaluate their efficacy and cost-effectiveness in improving cancer care.     

Caring for older culturally and linguistically diverse patients with Cancer: Healthcare Providers' perceived barriers to communication

BackgroundDue to various socio-cultural and language related factors, healthcare providers experience barriers when communicating with older culturally and linguistically diverse (CALD) patients with cancer, which can lower the quality of care received by patients and negatively impact healthcare providers. Studies focusing on communication barriers of older CALD patients with cancer and a systematic comparison of those barriers between different healthcare providers have been largely missing.ObjectivesIn order to lay out the healthcare providers' perceived barriers to communication, the present study identified and compared communication barriers among different healthcare providers when caring for older CALD patients with cancer.MethodsAn online survey was conducted among healthcare providers in the Netherlands who identified as being involved in the care of CALD patients with cancer (N = 191), specifically; GPs (N_GPs = 54), specialists (N_specialists = 29), oncology nurses (N_nurses = 77), and pharmacists (N_pharmacists = 31). Providers assessed twelve pre-specified factors on (i) importance and (ii) frequency of these factors as barriers to communication. A composite score by employing the QUOTE (Quality Of care Through the patients' Eyes) methodology was used to rank, and classify factors as either potential or influential barriers.Results and conclusionOverall, low Dutch language proficiency of older CALD patients with cancer, family interpreters providing inadequate translations, not knowing the extent of patients' informational needs, cultural differences in views about healthcare (i.e., illnesses and treatments) and family members blocking communication were found to be influential communication barriers. Healthcare providers showed several differences in what they perceived to be a potential or an influential barrier: Cultural differences in views about healthcare and patients getting treatment in their home countries were important barriers for GPs, while not knowing the patient's contact person was for pharmacists. Nurses perceived the highest number of influential barriers, while specialists perceived the least. We conclude that specific interventions that address differences in perceived barriers among providers are needed, and we highlight potential interventions that involve digital communication tools, such as the Conversation Starter.     

How do the characteristics of breast cancer diagnostic assessment programmes influence service delivery: A mixed methods study

Diagnostic assessment programmes (DAPs) coordinate multidisciplinary teamwork (MDT), and improve wait times and patient satisfaction. No research has established optimal DAP design. This study explored how DAP characteristics influence service delivery. A mixed methods case study of four breast cancer DAPs was conducted including qualitative interviews with health‐care providers and retrospective chart review. Data were integrated using multiple approaches. Twenty‐three providers were interviewed; 411 medical records were reviewed. The number of visits and wait times from referral to diagnosis and consultation were lowest at a one‐stop model. DAP characteristics (rural–remote region, human resources, referral volume, organisation of services, adherence to service delivery targets and one‐stop model) may influence service delivery (number of visits, wait times). MDT, influenced by other DAP characteristics (co‐location of staff, patient navigators, team functioning), may also influence service delivery. While the one‐stop model may be ideal, all sites experienced similar and unique challenges. Further research is needed to understand how to optimise the organisation and delivery of DAP services. Measures reflecting individual, team and patient‐reported outcomes should be used to assess the effectiveness and impact of DAPs in addition to more traditional measures such as wait times.     

Patient participation in the medical decision‐making process in haemato‐oncology – a qualitative study

Cancer patients are showing increased interest in shared decision‐making. Patients with haematological illnesses, however, express considerably less desire for shared decision‐making as compared with other oncological patient groups. The goal of the current project was to identify the reasons for the lower desire for shared decision‐making among patients with haematological illness. We conducted qualitative, semi‐structured interviews with 11 haematological patients (39–70 years old) after the beginning of therapy concerning the course and evaluation of medical shared decision‐making. The patients were often overwhelmed by the complexity of the illness and the therapy and did not want to assume any responsibility in medical decision‐making. They reported a great deal of distress and very traditional paternalistic role expectations with regards to their health care providers, which limited the patients' ability to partake in the decision‐making process. In contrast to the socio‐cultural support for many other oncological diseases, haematological diseases are not as well supported, e.g. there is a lack of self‐help materials, systematic provision of information and support groups for patients, which may be related to a lower empowerment of this patient population. Results show the limits of patient participation in the context of highly complicated medical conditions. In addition to already researched preferences of the physicians and patients for shared decision‐making, future research should pay greater attention to the process and other variables relevant to this aspect of the doctor–patient relationship.     

Treatment challenges and support needs of underserved Hispanic patients diagnosed with lung cancer and head-and-neck cancer

Abstract

Purpose: We explored the treatment challenges and support needs that Hispanic underserved lung cancer and head-and-neck cancer patients face while undergoing cancer treatment.

Design: Qualitative design - ethnography.

Sample: Using a sample of 29 participants, we conducted semi-structured interviews with nine lung cancer and head-and-neck cancer survivors and seven health care providers and focus group interviews with six caregivers and seven patient navigators.

Method: Relevant themes were extracted with Ethnographic content analysis.

Findings: Participants reported treatment challenges and support needs in four areas: medical, financial, socio-cultural, and mental health. Health care providers and navigators primarily identified medical and financial challenges that impact treatment adherence, while patients and caregivers expressed the need for support for mental health problems (i.e., depression, anxiety).

Implications for psychosocial providers: Understanding the experiences of underserved Hispanic cancer survivors can aid in creating psychosocial interventions that successfully target treatment-related challenges and provide them with the support they need.     

Interventions to improve patient understanding of cancer clinical trial participation: a systematic review

Patient misunderstanding of cancer clinical trial participation is identified as a critical issue and researchers have developed and tested a variety of interventions to improve patient understanding. This systematic review identified nine papers published between 2000 and 2013, to evaluate the effects of interventions to improve patient understanding of cancer clinical trial participation. Types of interventions included audio‐visual information, revised written information and a communication training workshop. Interventions were conducted alone or in combination with other forms of information provision. The nine papers, all with methodological limitations, reported mixed effects on a small range of outcomes regarding improved patient understanding of cancer clinical trial participation. The methodological limitations included: (1) the intervention development process was poorly described; (2) only a small element of the communication process was addressed; (3) studies lacked evidence regarding what information is essential and critical to enable informed consent; (4) studies lacked reliable and valid outcome measures to show that patients are sufficiently informed to provide consent; and (5) the intervention development process lacked a theoretical framework. Future research needs to consider these factors when developing interventions to improve communication and patient understanding during the informed consent process.     

Lower trial participation by culturally and linguistically diverse (CALD) cancer patients is largely due to language barriers

1 Aim

Clinical trials play a critical role in advancing cancer care, but international research shows that few cancer patients, particularly culturally and linguistically diverse (CALD) patients, participate in trials. This limits generalizability of trial results and increases health disparities. This study aimed to establish rates and correlates of trial participation among CALD patients in South Western Sydney Local Health District (SWSLHD), a highly culturally diverse area.

2 Methods

Data from all cancer patients diagnosed and/or treated in SWSLHD from January 2006 to July 2016 were analyzed retrospectively. The primary outcome was trial enrolment among patients born in non‐English speaking countries (CALD) versus English speaking countries (non‐CALD). Multivariable logistic regression evaluated CALD status as a predictor of trial participation. Moderators of trial participation by the different CALD groups, namely those whose preferred language was English (CALD‐PLE) or was not English (CALD‐PLNE), were examined by testing interactions between CALD status and other demographic and clinical variables.

3 Results

A total of 19 453 patients were analyzed (54.9% non‐CALD, 16.5% CALD‐PLE, 18.5% CALD‐PLNE). Overall, 7.4% of patients were enrolled in a trial. Trial participation was significantly lower in CALD patients than non‐CALD patients (5.7% vs 8.4%; odds ratio [OR] = 0.80; 95% confidence interval [CI], 0.69–0.91; P = 0.001). CALD‐PLNE patients were less likely to participate in trials than non‐CALD (OR = 0.45; 95% CI, 0.36–0.56; P < 0.0001) and CALD‐PLE patients (OR = 0.53; 95% CI, 0.67–0.41; P < 0.0001).

4 Conclusions

Limited English proficiency seems particularly unfavorable to trial participation. Development and evaluation of strategies to overcome language barriers (e.g. simplified and translated multimedia participant information materials) is needed.     

Barriers and facilitators towards fertility preservation care for cancer patients: a meta‐synthesis

Infertility is a potential late‐effect of cancer treatment, which negatively impact on young cancer survivors' quality of life. This paper aims to synthesise factors that influence patients', carers’ and healthcare professionals’ decision to engage in fertility preservation programmes at the time of cancer diagnosis. Four databases and grey literature were systematically searched to identify qualitative and mixed‐method studies published between 2000 and 2015. Thematic framework and synthesis were used to analyse and synthesise the data. Thirty‐seven papers were selected and represented. Factors that affect engagement of patients, carers and healthcare providers in fertility preservation care can be grouped as intrinsic and extrinsic. Intrinsic factors include patients' attitudes, health beliefs and health literacy; clinicians’ approaches and skills; as well as doctor–patient relationships. Extrinsic factors include fertility preservation care resources and institutional characteristics. We conclude that existing qualitative literature highlights the complex convergences of intrinsic and extrinsic factors that impede successful engagement in fertility preservation care. Addressing these factors could help cancer survivors achieve better health outcomes and improve their wellbeing. Potential solutions include attitudinal changes and organisational skill reforms across the health community that will help ensure a person's goals are always at the centre of their cancer care.     

A review of factors affecting patient fertility preservation discussions & decision‐making from the perspectives of patients and providers

Women undergoing cancer treatments and their healthcare providers encounter challenges in fertility preservation (FP) discussions and decision‐making. A systematic review of qualitative research was conducted to gain in‐depth understanding of factors influencing FP discussions and decision‐making. Major bibliographic databases and grey literature in English from 1994 to 2016 were searched for qualitative research exploring patient/provider perspectives on barriers and facilitators to FP decision‐making. Two researchers screened article titles, abstracts and full‐texts. Verbatim data on research questions, study methodology, participants, findings and discussions of findings were extracted. Quality assessment and thematic analysis were conducted. The search yielded 74 studies dating from 2007 onwards; 29 met the inclusion criteria. Analysis revealed three types of barriers: (a) FP knowledge, skills and information deficits contributed to discomfort for providers and discontent for patients; (b) psychosocial factors and clinical issues influenced providers’ practices around FP discussions and patients’ decision‐making; and (c) material, social and structural factors (e.g., lack of resources and accessibility) posed challenges to FP discussions. Potential facilitators to FP discussions and decision‐making were also identified. A discussion of ways to improve physician's knowledge and facilitate women's decision‐making and access to FP is presented, along with areas for policy development and further research.     

Training Experiences of Lay and Professional Patient Navigators for Colorectal Cancer Screening

Patient navigation (PN) is increasingly used in cancer care, but little is known about the identification and training of patient navigators. PN may be implemented by professional health care providers, paraprofessionals, or lay health workers and, therefore, presents an opportunity to compare professional and lay interventionist experiences. The goal of the current report is to compare the training experiences of four professional (Pro) and five lay (LHW) patient navigators enlisted to increase colonoscopy adherence among African American primary care patients. The results of early assessments showed that LHWs’ intervention-related knowledge was significantly lower than that of Pros. However, there were no significant differences in knowledge scores between LHWs and Pros for most subsets of knowledge items in later assessments. Furthermore, there were no significant differences in LHWs’ and Pros’ reported self-efficacy and satisfaction with training. Findings support the use of diverse strategies to train and prepare LHWs as patient navigators.