Development and pilot‐testing of a Decision Aid for use among Chinese women facing breast cancer surgery

Background Women choosing breast cancer surgery encounter treatment decision‐making (TDM) difficulties, which can cause psychological distress. Decision Aids (DAs) may facilitate TDM, but there are no DAs designed for Chinese populations. We developed a DA for Chinese women newly diagnosed with breast cancer, for use during the initial surgical consultation. Aims Conduct a pilot study to assess the DA acceptability and utility among Chinese women diagnosed with breast cancer. Methods Women preferred the DA in booklet format. A booklet was developed and revised and evaluated in two consecutive pilot studies (P1 and P2). On concluding their initial diagnostic consultation, 95 and 38 Chinese women newly diagnosed with breast cancer received the draft and revised draft DA booklet, respectively. Four‐day post‐consultation, women had questionnaires read out to them and to which they responded assessing attitudes towards the DA and their understanding of treatment options. Results The original DA was read/partially read by 66/22% (n = 84) of women, whilst the revised version was read/partially read by 74/16% (n = 35), including subliterate women (χ² = 0.76, P = 0.679). Knowledge scores varied with the extent the booklet was read (P1: F = 12.68, d.f. 2, P < 0.001; P2: F = 3.744, d.f. 2, P = 0.034). The revised, shorter version was graphically rich and resulted in improved perceived utility, [except for the ‘treatment options’ (χ² = 5.50, P = 0.019) and ‘TDM guidance’ (χ² = 8.19, P = 0.004) sections] without increasing anxiety (F = 0.689, P = 0.408; F = 3.45, P = 0.073). Conclusion The DA was perceived as acceptable and useful for most women. The DA effectiveness is currently being evaluated using a randomized controlled trial.     

Psychometric properties and responsiveness of the EORTC Quality of Life Questionnaire (QLQ-C30) in patients with breast,ovarian and lung cancer

The QLQ-C30, a health-related quality of life questionnaire developed for use in patients with cancer, has been previously validated in patients with lung cancer and head and neck cancer. In this study, further validation was carried out for 535 patients, including patients with breast cancer (n=143) and ovarian cancer (n=111) for whom there is no previously published validation, as well as patients with lung cancer (n=121). All patients were entered in one of two trials of anti-emetics to prevent chemotherapy-induced emesis. The QLQ-C30 was completed before chemotherapy and on day 8 after chemotherapy. The factor structure in patients with breast and ovarian cancer was similar to that previously described. Interdomain correlations, in the entire group, were strongest for the physical and role function domains and the fatigue, pain and global quality of life.domains before and after chemotherapy. In addition, after chemotherapy, social function was also strongly correlated with fatigue and global quality of life. These correlations were not always of equal strength in the breast, ovarian and lung groups, suggesting that there may be differences between these groups. The responsiveness of the QLQ-C30 in the presence of widely metastatic, as compared with locoregional, disease showed changes in the expected directions (i.e., diminished function in physical and social role functions and in global quality of life, with greater fatigue and pain in patients with metastatic disease). Eight days after chemotherapy, decreases were seen in physical, role and social functioning and in global quality of life, and there was greater fatigue, nausea and vomiting compared with before chemotherapy. Patients with breast cancer had better physical, role and social functioning, and less fatigue and pain than patients with ovarian cancer. This result is expected, since many of the patients with breast cancer had early stage disease, whereas those with ovarian cancer had advanced stage disease. Mean scores for patients with lung cancer were between the other two groups, in keeping with the mixture of early and advanced stage disease in these patients. There was a strong correlation between ECOG performance status scores and several domains of the QLQ-C30; these were all in the expected directions. The results of this study confirm those in earlier studies on patients with lung cancer, and provide new information on patients with breast and ovarian cancer. In addition, the QLQ-C30 is responsive to the effects of chemotherapy and of metastatic disease.     

Communicating uncertainty can lead to less decision satisfaction: a necessary cost of involving patients in shared decision making?

Background Given the large number of interventions of uncertain effectiveness, research on communicating uncertainty is needed to examine its impact on patients’ health decisions. Objective To examine physicians’ communication of uncertainty and its impact on patients’ decisions and decision satisfaction. Design, setting, and participants Participants included female patients seen in a breast health centre whose physicians were discussing a decision with them, with no clear ‘best’ choice based on outcome evidence. Main variables Decision communication was measured using the OPTION scale, a measure of the degree to which physicians involve patients in a decision‐making process. One‐to‐two weeks after the discussion, patients reported their satisfaction with the decision‐making process and their decision. Decisions were verified in medical charts with patient consent. Results Seventy‐five women agreed to participate (94% response rate). The mean translated score of the OPTION scale was 68.0 (SD 18.3), but only 33.2 (SD 19.1) for the uncertainty items. Among cancer patients, communicating uncertainty was negatively related to decision satisfaction (P < 0.002), and there was an interaction between patient involvement in decisions and communicating uncertainty in relation to patients’ decision satisfaction (P < 0.03). Discussion Communicating scientific uncertainty might lead to less decision satisfaction among women facing cancer treatment decisions; this could be a natural outcome of the decision making process. Involving patients in decisions might help them tolerate uncertainty. Conclusion Future studies should consider assessing other outcomes (e.g. knowledge, physician support) of the decision making process. There may be trade‐offs between acknowledging uncertainty and immediate decision satisfaction.     

How Effective is the Treatment of Locally Advanced and Metastatic Breast Cancer in Developing Centres?: A Retrospective Review

Background

The use of chemotherapy in advanced metastatic breast cancer remains a subject of controversy. The thought of MicKinnon et al (early 1950s) that the course of breast cancer was unaffected by chemotherapy has been refuted by results of treatment in the developed countries. The poor result of treatment in developing centres still compares with prechemotherapy era. Consequently, The McKinnon''s thought may still lurk. We compared the survival of chemotherapy treated with chemotherapy untreated cancer of breast patients.

Method

Records of breast cancer patients who presented and died between January 2010 and May 2014 were reviewed. The primary outcome was overall survival. Records of patients that received chemotherapy with or without other tumor directed specific therapy were compared with records of patients who did not receive any tumor directed therapy.

Result

Thirty-one patients received chemotherapy while 25 patients did not. All were females, more than 90% were of the patients had advanced or metastatic disease. Treatments were not biologically directed and treatment plans were largely compromised and suboptimal. The overall mean survival was 19.2 ±9.2 months, and the median duration was 17.5 months(range 6–44months). The overall survival was not statistically different between the two groups (p= 0.230, unequal variance assumed). The objective of using neoadjuvant chemotherapy for fungating lesions was not achieved.

Conclusion

In advanced and metastatic breast cancer, outcomes of patients who receive suboptimal regimen of cytotoxic chemotherapy do not differ from chemotherapy untreated patients.     

Developing and testing a brief clinic‐based lung cancer screening decision aid for primary care settings

Background

Cancer screening‐related decisions require patients to evaluate complex medical information in short time frames, often with primary care providers (PCPs) they do not know. PCPs play an essential role in facilitating comprehensive shared decision making (SDM).

Objective

To develop and test a decision aid (DA) and SDM strategy for PCPs and high‐risk patients.

Design

The DA was tested with 20 dyads. Each dyad consisted of one PCP and one patient eligible for screening. A prospective, one‐group, mixed‐method study design measured fidelity, patient values, screening intention, acceptability and satisfaction.

Results

Four PCPs and 20 patients were recruited from an urban academic medical centre. Most patients were female (n = 14, 70%), most had completed high school (n = 15, 75%), and their average age was 65 years old. Half were African American. Patients and PCPs rated the DA as helpful, easy to read and use and acceptable in terms of time frame (observed t = 11.6 minutes, SD 2.7). Most patients (n = 16, 80%) indicated their intent to be screened. PCPs recommended screening for most patients (n = 17, 85%).

Conclusions

Evidence supports the value of lung cancer screening with LDCT for select high‐risk patients. Guidelines endorse engaging patients and their PCPs in SDM discussions. Our findings suggest that using a brief, interactive, plain‐language, culturally sensitive, theory‐based DA and SDM strategy is feasible, acceptable and may be essential to effectively translate and sustain the adoption of LDCT screening recommendations into the clinic setting.     

Feasibility and acceptability of a decision aid designed for people facing advanced or terminal illness: a pilot randomized trial

Background Patients nearing the end of their lives face an array of difficult decisions. Objective This study was designed to assess the feasibility and acceptability of a decision aid (DA) designed for patients facing advanced or terminal illness. Design We conducted a pilot randomized clinical trial of Health Dialog’s Looking Ahead: choices for medical care when you’re seriously ill DA (booklet and DVD) applied to patients on a hospital‐based palliative care (PC) service. Setting University of Colorado Hospital – December 2009 and May 2010. Participants All adult, English‐speaking patients or their decision makers were potentially eligible. Patients were not approached if they were in isolation, did not speak English or if any provider felt that they were not appropriate because of issues such as family conflict or actively dying. Intervention All participants received a standard PC consultation. Participants in the intervention arm also received a copy of the DA. Measurements Primary outcomes included decision conflict and knowledge. Participants in the intervention arm also completed an acceptability questionnaire and qualitative exit interviews. Results Of the 239 patients or decision makers, 51(21%) enrolled in the trial. The DA had no significant effect on decision conflict or knowledge. Exit interviews indicated it was acceptable and empowering, although they wished they had access to the DA earlier. Conclusions While the DA was acceptable, feasibility was limited by late‐life illness challenges. Future trials of this DA should be performed on patients earlier in their illness trajectory and should include additional outcome measures such as self‐efficacy and confidence.     

Communicating about breast cancer: rural women's experience of interacting with their surgeon

Objective: This study examined rural women's satisfaction with the interaction and communication with their surgeon during diagnosis and treatment planning for early breast cancer. Differences in satisfaction were investigated between treatment groups (mastectomy and breast conservation surgery) and demographic variables (age, marital status, education level, employment status and place of residence). Practice was compared with clinical practice guidelines. Design: The study was designed as a cross‐sectional survey. Setting: The study was set in Eastern regional Victoria, Australia. Participants: Seventy women diagnosed with early breast cancer participated in the study. Main outcome measures: The main outcome measures used by the study were satisfaction in three areas of practice: (i) telling a woman she has breast cancer; (ii) providing information and involving the woman in the decision‐making; and (iii) preparing the woman for specific management. Results: No differences in satisfaction were found between treatment groups and demographic variables. Overall, women in this study were highly satisfied (>93%) with the interaction and communication with their surgeon. Women reported that the surgeon created a supportive environment for discussion, that they were provided with adequate information and referrals, and that they were actively involved in the decision‐making. Practice could have been improved for women who were alone at diagnosis as women without a partner made a quicker decision about treatment. Conclusion: Rural women in Victoria Australia were largely satisfied with the interaction and communication with their surgeon during diagnosis and treatment planning for early breast cancer. Current practice was predominately in line with clinical practice guidelines.     

Preliminary testing of a just-in-time, user-defined values clarification exercise to aid lower literate women in making informed breast cancer treatment decisions

Objective To report on the initial testing of a values clarification exercise utilizing a jewellery box within a computerized patient decision aid (CPtDA) designed to assist women in making a surgical breast cancer treatment decision. Design Pre‐post design, with patients interviewed after diagnosis, and then after completing the CPtDA sometime later at their preoperative visit. Sample Fifty‐one female patients, who are low literate and naïve computer users, newly diagnosed with early stage breast cancer from two urban public hospitals. Intervention A computerized decision aid that combines entertainment‐education (edutainment) with enhanced (factual) content. An interactive jewellery box is featured to assist women in: (1) recording and reflecting over issues of concern with possible treatments, (2) deliberating over surgery decision, and (3) communicating with physician and significant others. Outcomes Patients’ use of the jewellery box to store issues during completion of the CPtDA, and perceived clarity of values in making a treatment decision, as measured by a low literacy version of the Decisional Conflict Scale (DCS). Results Over half of the participants utilized the jewellery box to store issues they found concerning about the treatments. On average, users flagged over 13 issues of concern with the treatments. Scores on the DCS Uncertainty and Feeling Unclear about Values subscales were lower after the intervention compared to before the decision was made. Conclusions A values clarification exercise using an interactive jewellery box may be a promising method for promoting informed treatment decision making by low literacy breast cancer patients.     

Eliciting patients’ preferences for adjuvant chemotherapy in breast cancer: development and validation of a bedside decision‐making instrument in a French Regional Cancer Centre

Introduction

In developed countries, the physician‐patient relationship is moving from a paternalistic model to new decision‐making models that take patient preferences into account.

Objectives

Our aim was to develop a Decision Board (DB) and to test its acceptability in a French Regional Cancer Centre regarding the decision on whether or not to use chemotherapy after surgery in postmenopausal women with breast cancer. This paper presents the development process for this instrument and reports the pretesting phase, as well as the corresponding results.

Methods

A working group was created with oncologists, psychologists and economists. Following the first phase, i.e. the development process, a first version of the instrument was presented to health professionals. Their feedback led to important modifications of the instrument. The DB was then presented to experienced patients, which resulted in slight changes. The second phase consisted of pretesting the comprehension, internal and across‐time consistency of the DB on healthy volunteers.

Results

The DB was pretested in a group of 40 healthy volunteers. Eighteen respondents chose chemotherapy and 22 chose not to have chemotherapy. Comprehension rates were very high (≥87.5%). Internal consistency was assessed considering option attitudes based on outcomes and option attitudes based on process. Women shifted their choices in a predictable way. Across‐time consistency was appraised using the test‐retest method with Visual Analog Scales. The Intraclass Correlation Coefficient was 0.97.

Discussion‐conclusion

Due to cultural differences, the DB developed in our French Cancer Centre is quite different from the DBs previously developed elsewhere. Our instrument showed good comprehension and consistency properties, which are corroborated by the DB literature. Whether our DB is acceptable for patients with breast cancer must still be tested. Patients’ reactions will tell us which type of decision‐making model is at work. Further research is needed in order to explore the shared decision‐making process and clarify the concept.

     

Development and evaluation of a decision aid for patients with stage IV non‐small cell lung cancer

Although guidelines for treating stage IV non‐small cell lung cancer suggest that the patient’s values should be considered in decision‐making, there are no practical tools available to assist them with their decision‐making.

Objective

To develop and evaluate a decision aid that incorporates patient values.

Design and sample

(1) Before/after evaluation with patients referred to a regional cancer centre. (2) Mailed survey of thoracic surgeons and respirologists in Ontario.

Intervention

An audio‐tape guided individuals to review a booklet describing stage IV non‐small cell lung cancer, its impact and possible coping strategies, treatment options, benefits and risks, and examples of the decision‐making of others. Patients then used a worksheet to consider and communicate personal issues involved in the choice, including: personal values using a ‘weigh‐scale’; questions; preferred role in decision‐making; and predisposition.

Measures

(1) Patient questionnaires eliciting knowledge, the decision, decisional conflict and acceptability of the decision aid. (2) Physician questionnaires eliciting attitudes toward the decision aid.

Results

(1) Twenty of 30 patients used the aid in decision‐making. Users thought that the aid was acceptable and significantly improved their knowledge about options and outcomes (P < 0.001), and reduced their decisional conflict (P < 0.001). (2) The majority of the 29 physicians who reviewed the decision aid found it acceptable, were comfortable providing it to patients and said that they were likely to use it.

Conclusion

The decision aid is a useful and acceptable adjunct to personal counselling.

     

Perception of quality of life by patients, partners and treating physicians

The objective of the study was to determine possible differences in perception of quality of life (QoL) between patients with metastatic breast or prostate cancer, their partners, and the treating physician. Patients with metastatic breast cancer (n = 71), and metastatic prostate cancer (n = 29), a partner, and the physician each completed the same QoL questionnaire indicating how they perceived the patient's QoL. The European organization for research and treatment of cancer (EORTC) QLQ-C30 questionnaire was used to assess patients with breast cancer and the modified prostate cancer specific quality of life instrument (PROSQOLI) for patients with prostate cancer. There was reasonable agreement in mean scores between patients, and physicians or partners, for many domains of QoL; however, there was substantial discordance between scores when considering individual patients. For patients with metastatic breast cancer, physicians systematically underestimated overall QoL (p = 0.0002), social functioning (p = 0.001), and role functioning (p = 0.008), while partners showed better agreement. With prostate cancer physicians tended to underestimate pain, while mean scores for spouses were more concordant. There is substantial variability between ratings of QoL by physicians or partners, as compared to patient ratings. Medical decisions should be based on information about QoL provided by patients using validated methods. This revised version was published online in July 2006 with corrections to the Cover Date.     

Is Distance to Provider a Barrier to Care for Medicaid Patients With Breast,Colorectal, or Lung Cancer?

Purpose: Distance to provider might be an important barrier to timely diagnosis and treatment for cancer patients who qualify for Medicaid coverage. Whether driving time or driving distance is a better indicator of travel burden is also of interest. Methods: Driving distances and times from patient residence to primary care provider were calculated for 3,917 breast, colorectal (CRC) and lung cancer Medicaid patients in Washington State from 1997 to 2003 using MapQuest.com. We fitted regression models of stage at diagnosis and time‐to‐treatment (number of days between diagnosis and surgery) to test the hypothesis that travel burden is associated with timely diagnosis and treatment of cancer. Findings: Later stage at diagnosis for breast cancer Medicaid patients is associated with travel burden (OR = 1.488 per 100 driving miles, P= .037 and OR = 1.270 per driving hour, P= .016). Time‐to‐treatment after diagnosis of CRC is also associated with travel burden (14.57 days per 100 driving miles, P= .002 and 5.86 days per driving hour, P= .018). Conclusions: Although travel burden is associated with timely diagnosis and treatment for some types of cancer, we did not find evidence that driving time was, in general, better at predicting timeliness of cancer diagnosis and treatment than driving distance. More intensive efforts at early detection of breast cancer and early treatment of CRC for Medicaid patients who live in remote areas may be needed.     

Development and evaluation of a breast cancer prevention decision aid for higher-risk women

Objective To develop and evaluate the effectiveness of a breast cancer prevention decision aid for women aged 50 and older at higher risk of breast cancer. Design Pre‐test–post‐test study using decision aid alone and in combination with counselling. Setting Breast Cancer Risk Assessment Clinic. Participants Twenty‐seven women aged 50–69 with 1.66% or higher 5‐year risk of breast cancer. Intervention Self‐administered breast cancer prevention decision aid. Main outcome measures Acceptability; decisional conflict; knowledge; realistic expectations; choice predisposition; intention to improve life‐style practices; psychological distress; and satisfaction with preparation for consultation. Results The decision aid alone, or in combination with counselling, decreased some dimensions of decisional conflict, increased knowledge (P < 0.01), and created more realistic expectations (P < 0.01). The aid in combination with counselling, significantly reduced decisional conflict (P < 0.01) and psychological distress (P < 0.02), helped the uncertain become certain (P < 0.02), and increased intentions to adopt healthier life‐style practices (P < 0.03). Women rated the aid as acceptable, and both women and practitioners were satisfied with the effect it had on the counselling session. Conclusion The decision aid shows promise as a useful decision support tool. Further research should compare the effect of the decision aid in combination with counselling to counselling alone.     

A mechanistic breast cancer survival modelling through the axillary lymph node chain

In this paper, we proposed a mechanistic breast cancer survival model based on the axillary lymph node chain structure, considering lymph nodes as a potential dissemination arrangement. We assume a naive breast cancer treatment protocol consisting of exposing patients first to a chemotherapy treatment on r intervals at k‐cycles separated by equal time intervals, and then they proceed to surgery. Our model, different from former ones, accommodates a quantity of contaminated lymph nodes, which is observed during surgery. We assume a generalised negative binomial survival distribution for the unknown number of contaminated lymph nodes after surgery, which, during an unknown period, may potentially propagate the disease. Estimation is based on a maximum likelihood approach. A simulation study assesses the coverage probability of asymptotic confidence intervals when small or moderate samples are considered. A Brazilian breast cancer data illustrate the applicability of our modelling. Copyright © 2012 John Wiley & Sons, Ltd.     

Feasibility,Safety, and Beneficial Effects of MCT-Based Ketogenic Diet for Breast Cancer Treatment: A Randomized Controlled Trial Study

Abstract

The present study was aimed to evaluate the safety, tolerability, and beneficial effects of a ketogenic diet (KD) on body composition and blood parameters and survival in patients with breast cancer. In this randomized, controlled trial, 60 patients with locally advanced or metastatic breast cancer and planned chemotherapy, were randomly assigned to a group receiving KDs (n?=?30) or to a control group with standard diet (n?=?30) for 3 months. Serum biochemical parameters and body composition were analyzed at baseline, every 3 weeks and end of each arm. Compliance and safety of KD were also checked weekly. Fasting blood sugar (FBS) was significantly decreased in intervention group compared to the baseline (84.5?±?11.3 vs. 100.4?±?11.8, P?=?0.001). A significant inter-group difference was also observed for FBS level at end of intervention. There was an increasing trend in serum levels of ketone bodies in intervention group (0.007–0.92, P?<?0.001). Compared to the control group, BMI, body weight, and fat% were significantly decreased in intervention group in last visit (P?<?0.001). No severe adverse side effect was found regarding lipid profile and kidney or liver marker. Overall survival was higher in KD group compared to the control group in neoadjuvant patients (P?=?0.04). Our results suggested that chemotherapy combined with KDs can improve the biochemical parameters, body composition, and overall survival with no substantial side effects in patients with breast cancer.     

The use of haematopoietic stem cell transplantation in Fanconi anaemia patients: a survey of decision making among families in the US and Canada

Background

Fanconi anaemia (FA) is a rare genetic disorder associated with bone marrow failure (BMF), congenital anomalies and cancer susceptibility. Stem cell transplantation (SCT) offers a potential cure for BMF or leukaemia, but incurs substantial risks. Little is known about factors influencing SCT decision making.

Objective

The study objective was to explore factors influencing patients' with FA and family members' decision making about SCT.

Design

Using a mixed‐methods exploratory design, we surveyed US and Canadian patients with FA and family members who were offered SCT.

Main variables studied

Closed‐ended survey items measured respondents' beliefs about the necessity, risks and concerns regarding SCT; multivariable logistic regression was used to examine the association between these factors and the decision to undergo SCT. Open‐ended survey items measured respondents' perceptions of factors important to the SCT decision; qualitative analysis was used to identify emergent themes.

Results

The decision to undergo SCT was significantly associated with greater perceived necessity (OR = 2.81, P = 0.004) and lower concern about harms of SCT (OR = 0.31, P = 0.03). Qualitative analysis revealed a perceived lack of choice among respondents regarding the use of SCT, which was related to physician influence and respondent concerns about patients' quality of life.

Conclusions

Overall, study results emphasize the importance of the delicate interplay between provider recommendation of a medical procedure and patient/parental perceptions and decision making. Findings can help providers understand the need to acknowledge family members' perceptions of SCT decision making and offer a comprehensive discussion of the necessity, risks, benefits and potential outcomes.     

Intrinsic resistance to chemotherapy in breast cancer

Systemic therapy improves disease-free survival in patients with breast cancer, but does not cure patients with advanced or metastatic disease, and fails to benefit the majority of patients with localized breast cancer. Intrinsic resistance to chemotherapy is emerging as a significant cause of treatment failure and evolving research has identified several potential causes of resistance, such as drug efflux pumps, disregulation of apoptosis and cancer stem cells. Building upon preclinical models, drugs designed to reverse resistance to therapy are currently under investigation in clinical trials for the treatment of breast cancer.     

Barriers of and strategies for shared decision‐making implementation in the care of metastatic breast cancer: A qualitative study among patients and healthcare professionals in an Asian country

BackgroundShared decision‐making has been shown to improve the quality of life in metastatic breast cancer patients in high‐literacy and high‐resource settings. However, limited studies have examined the cultural preferences of metastatic breast cancer patients with shared decision‐making implementation and the barriers encountered in an Asian setting where societal norms predominate and physician decision‐making is at the forefront. This paper aims to identify (1) barriers to practising shared decision‐making faced by healthcare professionals and patients and (2) strategies for implementing shared decision‐making in the context of metastatic breast cancer management in Malaysia.MethodsWe conducted a qualitative study involving 12 patients diagnosed with metastatic breast cancer, 16 healthcare professionals and 5 policymakers from surgical and oncology departments at public healthcare centres in Malaysia. Semi‐structured in‐depth interviews and focus group discussions were conducted. The interviews were recorded, transcribed verbatim and analysed using the thematic approach. Nvivo software was used to manage and analyse the data.ResultsFive main themes emerged from the study: healthcare provider–patient communication, workforce availability, cultural and belief systems, goals of care and paternalism versus autonomy. Other strategies proposed to overcome barriers to implementing shared decision‐making were training of healthcare professionals and empowering nurses to manage patients'' psychosocial issues.ConclusionThis study found that practising shared decision‐making in the public health sector remains challenging when managing patients with metastatic breast cancer. The utilization of decision‐making tools, patient empowerment and healthcare provider training may help address the system and healthcare provider–patient barriers identified in this study.Patient or Public ContributionPatients were involved in the study design, recruitment and analysis.