Objective: Increasingly the views of young people are sought when improving healthcare; however, it is unclear how they shape policy or practice. This paper presents a consultation with young people commissioned by the National Institute for Health and Care Excellence (NICE) to inform clinical guidelines for paediatric palliative care (end-of-life care for infants, children and young people).
Methods: The consultation involved qualitative thematic analysis of data from 14 young people (aged 12–18 years) with a life-limiting or life-threatening condition who took part in focus groups or interviews. The topics explored were predefined by NICE: information and communication; care planning; place of care; and psychological care. Data collection consisted of discussion points and activities using visual cues and was informed by a pilot consultation group with five young adults (aged 19–24 years). Findings were shared with participants, and feedback helped to interpret the findings.
Results: Four overarching themes were identified, cutting across the predetermined topic areas: being treated as individuals with individual needs and preferences; quality of care more important than place; emotional well-being; and living as a young person. Importantly, care planning was viewed as a tool to support living well and facilitate good care, and the young people were concerned less about where care happens but who provides this.
Conclusion: Young people’s priorities differ from those of parents and other involved adults. Incorporating their priorities within policy and practice can help to ensure their needs and preferences are met and relevant research topics identified.
BACKGROUND: Patients have a 'need to know' (instrumental need) and a 'need to feel known' (affective need). During consultations with patients with limited health literacy (LHL) in the palliative phase of their disease, both the instrumental and the affective communication skills of healthcare providers are important. The study aims to explore instrumental and affective communication between care providers and LHL patients in the palliative phase of COPD or cancer.
METHODS: In 2018, consultations between LHL patients in the palliative phase of cancer or COPD and their healthcare providers were video-recorded in four hospitals in the Netherlands. As there was no observation algorithm available for this setting, several items were created to parameterize healthcare providers' instrumental communication (seven items: understanding, patient priorities, medical status, treatment options, treatment consequences, prognosis, and information about emotional distress) and affective communication (six items: hope, support, reassurance, empathy, appreciation, and emotional coping). The degree of each item was recorded for each consultation, with relevant segments of the observation selected and transcribed to support the items.
RESULTS: Consultations between 17 care providers and 39 patients were video-recorded and analyzed. Care providers primarily used instrumental communication, most often by giving information about treatment options and assessing patients' care priorities. Care providers assessed patients' understanding of their disease less often. The patients' prognosis was not mentioned in half the consultations. Within the affective domain, the care providers did provide support for their patients; providing hope, reassurance, empathy, and appreciation and discussing emotional coping were observed less often.
CONCLUSIONS: Care providers used mostly instrumental communication, especially treatment information, in consultations with LHL patients in the palliative phase of cancer or COPD. Most care providers did not check if the patient understood the information, which is rather crucial, especially given patients' limited level of health literacy. Healthcare providers did provide support for patients, but other expressions of affective communication by care providers were less common. To adapt the communication to LHL patients in palliative care, care providers could be less wordy and reduce the amount of information, use 'teach-back' techniques and pay more attention to affective communication.
OBJECTIVES: To identify sources used by patients with advanced or metastatic gynecologic cancer to learn about palliative care and to evaluate for differences in knowledge about palliative care and palliative care utilization by knowledge source.
METHODS: Gynecologic cancer patients receiving treatment for advanced or metastatic gynecologic cancer at a single academic medical center were surveyed about their awareness of and knowledge about palliative care. Medical chart review was conducted.
RESULTS: Of the 111 women surveyed, 70 had heard of palliative care (63%). Sixty-eight specified from where they learned of palliative care: cancer care (n=28, 41.2%), word of mouth (n=26, 38.2%), work (n=6, 8.8%), self-education (n=4, 5.9%), personal experience (n=2, 2.9%) or don't know (n=2, 2.9%). Knowledge about palliative care (p=0.35) and palliative care utilization (p=0.81) did not differ by awareness of palliative care.
CONCLUSION: Most women receiving treatment for advanced gynecologic cancer have heard of palliative care from sources other than their cancer care providers. Knowledge about palliative care and source of knowledge about palliative care were not associated with palliative care utilization. Awareness of palliative care and palliative care utilization may be improved by increasing the low rate of health provider-based education and engaging cancer patients' social networks.
PURPOSE: Malignant bowel obstruction (MBO) is common in advanced GI cancer, and MBO management, including drainage percutaneous endoscopic gastrostomy (dPEG), is palliative. How patients understand the goals of dPEG and its impact on disease is inadequately understood in the literature. Therefore, we analyzed these issues in patients with GI cancer.
METHODS: Demographics, clinical variables, and patient outcomes were abstracted from the medical record. Illness understanding and future expectations were retrieved from palliative care notes. We described additional treatment and outcomes after dPEG and estimated overall survival (OS).
RESULTS: From January 2015 to June 2017, 125 admitted patients with metastatic GI cancer underwent dPEG for MBO. Cancers were most commonly colorectal (34%) and pancreatic/ampullary (25%). During the dPEG admission, 32% (40 of 125) of patients had a palliative care consultation, and 22% (28 of 125) were asked about illness understanding and future expectations. All (28 of 28) reported good understanding of the advanced nature of their disease, but few were accurate about prognosis given their stage IV disease (10 of 28). Of the 117 (94%) discharged, 13% (15 of 117) received additional chemotherapy, which rarely prevented progression; half (63 of 117) had a do-not-resuscitate order; and most (101 of 117) were enrolled in hospice at death. Median time to death was 37 days (95% CI, 29 to 45 days); 6-month OS was 3.7% (95% CI, 1.2% to 8.4%).
CONCLUSION: dPEGs are placed close to end of life in patients with advanced GI cancer. A minority of patients receive additional chemotherapy post-dPEG. Many have adequate disease understanding, but chemotherapy benefit is low, and future expectations vary. This may be an opportunity for improved communication regarding palliative procedures in advanced cancer.
CONTEXT: Many advanced cancer patients have unrealistic prognostic expectations.
OBJECTIVES: We tested whether offering life expectancy (LE) statistics within palliative chemotherapy (PC) education promotes realistic expectations.
METHODS: In this multicenter trial, patients with advanced colorectal and pancreatic cancers initiating first or second line PC were randomized to usual care versus a PC educational tool with optional LE information. Surveys at 2 weeks and 3 months assessed patients' review of the LE module and their reactions; at 3 months, patients estimated their LE and reported occurrence of prognosis and end-of-life (EOL) discussions. Wilcoxon tests and proportional odds models evaluated between-arm differences in LE self-estimates, and how realistic those estimates were (based on cancer type and line of treatment).
RESULTS: From 2015-2017, 92 patients were randomized to the intervention and 94 to usual care. At baseline most patients (80.9%) wanted "a lot" or "as much information as possible" about the impact of chemotherapy on LE. Among patients randomized to the intervention, 52.0% reviewed the LE module by 2 weeks and 66.7% by 3 months - of whom 88.2% reported the information was important, 31.4% reported it was upsetting, and 3.9% regretted reviewing it. Overall, patients' LE self-estimates were very optimistic; 71.4% of colorectal cancer patients estimated >5yrs; 50% pancreatic patients estimated >2yrs. The intervention had no effect on the length or realism of patients' LE self-estimates, or on the occurrence of prognostic or EOL discussions.
CONCLUSIONS: Offering LE information within a PC educational intervention had no effect on patients' prognostic expectations.
PURPOSE: Capitalizing on the promise of patient-reported outcomes (PROs), electronic implementations of PROs (ePROs) are expected to play an important role in the development of novel digital health interventions targeting palliative cancer care. We performed a systematic and mapping review of the scientific literature on the current ePRO-based approaches used for palliative cancer care.
METHODS: Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement guidelines, the conducted review answered the research questions: "What are the current ePRO-based approaches for palliative cancer care; what is their contribution/value in the domain of palliative cancer care; and what are the potential gaps, challenges, and opportunities for further research?" After a screening step, the corpus of included articles indexed in PubMed or the Web of Science underwent full text review, which mapped the articles across 15 predefined axes.
RESULTS: The corpus of 24 mapped studies includes 9 study protocols, 7 technical tools/solutions, 7 pilot/feasibility/acceptability studies, and 1 evaluation study. The review of the corpus revealed (1) an archetype of ePRO-enabled interventions for palliative cancer care, which most commonly use ePROs as study end point assessment instruments rather than integral intervention components; (2) the fact that the literature has not fully embraced the modern definitions that expand the scope of palliative care; (3) the striking shortage of promising ubiquitous computing devices (eg, smart activity trackers); and (4) emerging evidence about the benefits of narrowing down the target cancer population, especially when combined with modern patient-centered intervention design methodologies.
CONCLUSION: Although research on exploiting ePROs for the development of digital palliative cancer care interventions is considerably active and demonstrates several successful cases, there is considerable room for improvement along the directions of the aforementioned findings.
BACKGROUND: Combining orders for do-not-resuscitate (DNR) for cardiac arrest with do-not-intubate (DNI) orders into a DNR/DNI code status is not evidence-based practice and may violate patient autonomy and informed consent when providers discuss intubation only in the context of CPR.
RESEARCH QUESTION: How often do providers refer to patients with a DNR order as "DNR/DNI" without documentation of refusal of intubation for non-arrest situations?
STUDY DESIGN AND METHODS: Retrospective observational study of adults (18 years or older) hospitalized in a Level 1 trauma/academic hospital between July 2017 and June 2018 inclusive with DNR orders placed during hospitalization RESULTS: Of 422 hospitalized adults with DNR orders, 261 (61.9%) had code status written in progress notes as DNR/DNI. Providers' use of the term DNR/DNI in progress notes was significantly (OR 2.21 99% CI 1.12 - 4.37) more common on medical hospital services (hospitalist, family medicine, internal medicine) than on non-medical ward services (medical/surgical intensive care units, surgery, psychiatry, neurology services).Of 261 "DNR/DNI"patients, providers did not document informed refusal of intubation for non-arrest situations for 68 (26.0%) of patients. By comparison, of 161 patients where providers documented code status in progress notes as DNR alone, 69 (42.9%) did have documentation of refusal of intubation for non-arrest events. Therefore, if a DNR/DNI code status was used in a non-arrest emergency to determine whether to intubate a patient, 68 (16.1%) of 422 patients could inappropriately be denied intubation without informed refusal (or despite their informed acceptance), and 69 (16.4%) could inappropriately be intubated despite their documented refusal of intubation.
INTERPRETATION: Conflation of DNR and DNI into DNR/DNI does not reliably distinguish patients who refuse or accept intubation for indications other than cardiac arrest, and thus may inappropriately deny desired intubation for those who would accept it, and inappropriately impose intubation on patients who would not.
This research study aimed to describe preferences about factors related to receiving information regarding medical treatments and palliative care (PC) options for adult patients with a poor prognosis and/or their primary decision maker. A single-group descriptive study design and content analysis were utilized. Seven trained registered nurse (RN) study team members conducted interviews to obtain narrative data. All study participants preferred to learn PC services earlier in the illness trajectory and desired to learn about this service from nurses. Most reported a desire to have spouses and family involved in decisions about PC. Nearly all wanted to understand PC options ahead of time should treatment not go as planned.
Background: Cervical cancer is mostly diagnosed at advanced stages among the majority of women in low-income settings, with palliative care being the only feasible form of care. This study was aimed at investigating palliative care knowledge and access among women with cervical cancer in Harare, Zimbabwe.
Methods: Sequential mixed methods design was used, consisting of two surveys and a qualitative inquiry. A census of 134 women diagnosed with cervical cancer who visited two cancer treating health facilities and one palliative care provider in Harare between January and April, 2018 were enrolled in the study. Seventy-eight health workers were also enrolled in a census in the respective facilities for a survey. Validated structured questionnaires in electronic format were used for both surveys. Descriptive statistics were generated from the surveys after conducting univariate analysis using STATA. Qualitative study used interview/discussion guides for data collection. Thematic analysis was conducted for qualitative data.
Results: Mean ages of patients and health workers in the surveys were 52 years (SD = 12) and 37 years (SD = 10,respectively. Thirty-two percent of women with cervical cancer reported knowledge of where to seek palliative care. Sixty-eight percent of women with cervical cancer had received treatment, yet only 13% reported receiving palliative care. Few women with cervical cancer associated treatment with pain (13%) and side effects (32%). More women associated cervical cancer with bad smells (81%) and death (84%). Only one of the health workers reported referring patients for palliative care. Seventy-six percent of health workers reported that the majority of patients with cervical cancer sourced their own analgesics from private pharmacies. Qualitative findings revealed a limited or lack of cervical cancer knowledge among nurses especially in primary health care, the existence of stigma among women with cervical cancer and limited implementation of palliative policy.
Conclusions: This study revealed limited knowledge and access to palliative care in a low-income setting due to multi-faceted barriers. These challenges are not unique to the developing world and they present an opportunity for low-income countries to start considering and strategizing the integration of oncology and palliative care models in line with international recommendations.
Context: Increasing emphasis on patient-centered care has led to highlighted importance of shared decision making, which better aligns medical decisions with patient care preferences. Effective shared decision making in metastatic breast cancer (MBC) treatment requires prognostic understanding, without which patients may receive treatment inconsistent with personal preferences.
Objectives: To assess MBC patient and provider perspectives on the role of prognostic information in treatment decision making.
Methods: We conducted semi-structured interviews with MBC patients and community oncologists and separate focus groups involving lay navigators, nurses, and academic oncologists. Qualitative analysis utilized a content analysis approach that included a constant comparative method to generate themes.
Results: Of 20 interviewed patients with MBC, 30% were African American. Academic oncologists were mostly women (60%), community oncologists were all Caucasian, and nurses were all women and 28% African American. Lay navigators were all African American and predominately women (86%). Five emergent themes were identified. (1) Most patients wanted prognostic information but differed in when they wanted to have this conversation, (2) Emotional distress and discomfort was a critical reason for not discussing prognosis, (3) Religious beliefs shaped preferences for prognostic information, (4) Health care professionals differed on prognostic information delivery timing, and (5) Providers acknowledged that an individualized approach taking into account patient values and preferences would be beneficial.
Conclusion: Most MBC patients wanted prognostic information, yet varied in when they wanted this information. Understanding why patients want limited or unrestricted prognostic information can inform oncologists' efforts toward shared decision making.
Background: Communication in do not resuscitate (DNR) and artificial nutrition and hydration (ANH) at the end of life is a key component of advance care planning (ACP) which is essential for patients with advanced cancer to have cares concordant with their wishes. The SOP model (Shared decision making with Oncologists and Palliative care specialists) aimed to increase the rate of documentation on the preferences for DNR and ANH in patients with advanced cancer.
Methods: The SOP model was implemented in a national cancer treatment center in Taiwan from September 2016 to August 2018 for patients with advanced cancer visiting the oncology outpatient clinic. The framework was based on the model of shared decision making as “choice talk” initiated by oncologists with “option talk” and “decision talk” conducted by palliative care specialists.
Results: Among 375 eligible patients, 255 patients (68%) participated in the model testing with the mean age of 68.5 ± 14.7 years (mean ± SD). Comparing to 52.3% of DNR documentation among patients with advanced cancer who died in our hospital, the rate increased to 80.9% (206/255) after the decision talk in our model. Only 6.67% (n = 17) of the participants documented their preferences on ANH after the model. A worse Eastern Cooperative Oncology Group Performance Status was the only statistically significant associating factor with a higher rate of DNR documentation in the multiple logistic regression model.
Conclusions: The SOP model significantly increased the rate of DNR documentation in patients with advanced cancer in this pilot study. Dissemination of the model could help the patients to receive care that is concordant with their wishes and be useful for the countries having laws on ACP.
Background: As of 2019, ten jurisdictions in the United States have authorized physicians to prescribe a lethal dose of medication to a terminally ill patient for the purpose of hastening death. Relatively little bioethics scholarship has addressed the question of whether physicians have an obligation to inform qualifying patients about aid-in-dying (AID) in permissive jurisdictions and little is known about providers' actual communication practices with respect to this issue.
Methods: One hundred and forty-four in-depth, semi-structured interviews were conducted and analyzed using an inductive analytic approach as part of the Vermont Study on Aid-in-Dying.
Results: Seventeen respondents, 14 physicians and 3 nurse practitioners, met the inclusion criteria for this sub-study. Eleven respondents indicated that they at least sometimes inform patients about AID. Respondents described multiple factors that influence whether or not they might initiate discussions of AID, including the importance of informing patients of their options for end-of-life care, worries about undue influence, and worries about the potential effects on the patient-provider relationship. For those providers who do initiate discussion of AID at least some of the time, attention to the particulars of each individual patient's situation and the context of the discussion appear to play a role in shaping communication about AID.
Conclusions: While initiating a clinical discussion of AID is undoubtedly challenging, our study provides compelling descriptive evidence that some medical providers who support AID do not unilaterally follow the conventional bioethics wisdom holding that they ought to wait for patients to introduce the topic of AID. Future research should investigate how to approach these discussions so as to minimize ethical worries about undue influence or potential negative consequences.
Background: Limited access to, understanding of, and trust in paper-based patient information is a key factor influencing paramedic decisions to transfer patients nearing end-of-life to hospital. Practical solutions to this problem are rarely examined in research. This paper explores the extent to which access to, and quality of, patient information affects the care paramedics provide to patients nearing end-of-life, and their views on a shared electronic record as a means of accessing up-to-date patient information.
Method: Semi-structured interviews with paramedics (n = 10) based in the north of England, drawn from a group of health and social care professionals (n = 61) participating in a study exploring data recording and sharing practices in end-of-life care. Data were analysed using thematic analysis.
Results: Two key themes were identified regarding paramedic views of patient information: 1) access to information on patients nearing end-of-life, and 2) views on the proposed EPaCCS. Paramedics reported they are typically unable to access up-to-date patient information, particularly advance care planning documents, and consequently often feel they have little option but to actively treat and transport patients to hospital – a decision not always appropriate for, or desired by, the patient. While paramedics acknowledged a shared electronic record (such as EPaCCs) could support them to provide community-based care where desired and appropriate, numerous practical and technical issues must be overcome to ensure the successful implementation of such a record.
Conclusions: Access to up-to-date patient information is a barrier to paramedics delivering appropriate end-of-life care. Current approaches to information recording are often inconsistent, inaccurate, and inaccessible to paramedics. Whilst a shared electronic record may provide paramedics with greater and timelier access to patient information, meaning they are better able to facilitate community-based care, this is only one of a series of improvements required to enable this to become routine practice.
BACKGROUND: Persons with dementia (PwD) often have significant cognitive deficits and functional limitations, requiring substantial caregiver assistance. Given the high symptom burden and terminal nature of dementia, good prognostic awareness and integration of palliative care (PC) is needed.
OBJECTIVE: To evaluate prognostic awareness, disease, and PC understanding among caregivers of PwD and to assess for improvements in routine care.
DESIGN: A cross-sectional study of 2 cohorts at a single-academic medical center. Surveys were mailed to 200 caregivers of PwD in 2012 (cohort 1). Surveys were sent to new subset of caregivers of PwD (n = 80) in 2018 (cohort 2) to assess trends over time.
RESULTS: A total of 154 of caregivers completed the survey (response rate 55%). Compared to 2012, a higher proportion of caregivers in 2018 reported having conversations about prognosis with PwD's physicians (25% in 2012 vs 45% in 2018; P = .027). However, a large percentage (43% in 2012 and 40% in 2018) of caregivers reported no understanding of the PwD's prognosis. Despite most stating dementia was not curable, only 39% in 2012 and 52% in 2018 (P = .015) understood that dementia was a terminal disease. In addition, only 32% in 2012 and 40% in 2018 (P = .39) felt that they were knowledgeable about PC.
CONCLUSIONS: Prognostic discussions between caregivers of PwD and the PwD's physicians may be occurring more often; however, a high percentage of caregivers report a poor understanding about the terminal nature of dementia and the role of PC.
This study aimed to determine the preferences of community-dwelling older people about information disclosure regarding poor prognosis, the likely symptoms and problems, and the care options available in a situation of serious illness with less than a year to live; and to identify factors associated with a preference for information disclosure regarding poor prognosis. The Brazilian version of the Preferences and Priorities for End of Life Care (PRISMA) questionnaire was administered face-to-face to 400 older people, living in the city of Belo Horizonte, Minas Gerais, Brazil. The main results indicated that 74.0% preferred to be informed that they had limited time left, 89.3% wished to be informed about symptoms and problems, and 96.3% about available care options. The factors associated with preferences for information about poor prognosis were: gender (women: OR = 0.446, 95% CI: 0.269-0.738) and choosing the least preferred place to die (home of a relative or friend: OR = 2.423, 95% CI: 1.130-5.198. These results show that most older people want to be informed in an advanced illness situation with less than a year to live. Health care professionals need to be prepared to anticipate news about poor prognosis and the disease.
Whether because of a cultural pattern or personal preference, palliative care clinicians encounter persons approaching the end of life who wish to limit or forego prognostic information relating to their situation. This scenario has received attention in a recent motion picture as well as a newly available advance directive modification-the Prognosis Declaration form. The ordinary expectation for end-of-life shared decision-making with a capable person is clinician disclosure of the best effort at prognostic assessment. The optimal match between the expressed values, goals, and preferences of the person with available clinician expertise is hopefully achieved. For the clinician, a person's choice to modify information disclosure and participation in shared decision-making represents a significant challenge of balancing key ethical principles of intervention with tolerance and compassion for these different preferences. Attention to communication strategies that elicit and appropriately reassess individual information and decision-making wishes, flexibility in information disclosure patterns with capable persons and their representatives, and recognition that a respect for autonomy includes the choice to opt out can approach this challenge while providing compassionate and ethical end-of-life care.
Background: The prognosis of an aggressive lymphoma can change dramatically following failure of first-line treatment. This sudden shift is challenging for the promotion of illness understanding and advance care planning (ACP). Yet, little is known about illness understanding and ACP in patients with aggressive lymphomas.
Objective: To examine illness understanding, rates of engagement in ACP, and reasons for lack of ACP engagement in patients with advanced B cell lymphomas.
Design: Cross-sectional observational study.
Setting/Subjects: Patients (n = 27) with aggressive B cell lymphomas that relapsed after first- or second-line treatment treated at a single urban academic medical center.
Measurements: Participants were administered structured surveys by trained staff to obtain self-report measures of illness understanding (i.e., aggressiveness, terminality, curability) and ACP (i.e., discussions of care preferences, completion of advance directives).
Results: The majority of patients reported discussing curability (92.6%), prognosis (77.8%), and treatment goals (88.9%) with their medical team. Yet, less than one-third of patients reported being terminally ill (29.6%) and having incurable disease (22.2%). Most patients had a health care proxy (81.5%) and had decided about do-not-resuscitate status (63%), but the majority had not completed a living will (65.4%) or discussed their care preferences with others (55.6%).
Conclusions: The accuracy of lymphoma patients' illness understanding following first-line treatment is difficult to determine due to the potential for cure following transplant. However, this study suggests that a large proportion of patients with advanced B cell lymphomas may underestimate the severity of their illness, despite discussing illness severity with their medical team. Providing patients with information on prognosis, and the ACP process may increase engagement in ACP.
The Epilepsy Deaths Register (EDR) differs from typical registries which concentrate primarily on clinical information. It is completed by bereaved relatives and focuses on the circumstances immediately before, and the support following, a death. It can be augmented by copies of death certificates from the families of the deceased, and all epilepsy associated deaths can be entered. The EDR is underpinned by the research and experience of the SUDEP Action team and the clinical advisors who helped design the methodology and the web-based platform. The EDR has been open since 2013 and currently has over 750 entries from over 20 different countries, the majority from the United Kingdom and the Republic of Ireland. The bereaved have shown that they place their trust in the register as a vehicle to be involved in research, even under the most difficult of circumstances. As the EDR matures, we hope to identify the common and rarer patterns of epilepsy-associated death; maintaining our dual ambitions to remain committed to listen, and to make every death count.
Cet article a pour objectif de présenter un livret d’information destiné aux patients d’une maladie lysosomale, à leurs familles et aux professionnels prenant soin d’eux. Ce livret tend à sensibiliser sur l’impact de la douleur chronique sur la qualité de vie et sur la démarche palliative. Les auteurs présentent le contexte de la construction de ce livret, son contenu et sa diffusion.
CONTEXT: Research Medical Donation (RMD), which entails collecting human tissue within hours after death, benefits cancer research but data are limited regarding barriers institutions face accruing patients to RMD programs.
OBJECTIVES: Generate stakeholder perspectives to best inform the complex RMD process, which includes communicating with patients and their proxies and procuring tissue in a timely manner, all the while respecting end-of-life care sensitivities.
METHODS: We explored perceived core needs and challenges of RMD by engaging stakeholders (cancer clinicians, patients, and their caregivers) in 8 teleconference focus groups. Breast, pancreatic, and lung cancer clinicians comprised 2 groups. Each cancer separately had 2 groups for patients and their caregivers combined. Qualitative analysis of focus group transcripts included identifying and reaching group consensus on transcript themes and establishing agreement on consensus templates to identify primary common and divergent themes.
RESULTS: A total of 45 people (13 clinicians, 24 patients, 8 caregivers) participated in the groups. The themes identified were: 1) clinicians and patients had limited previous knowledge about RMD; 2) RMD was perceived to mainly benefit research; 3) logistical and privacy questions arose; 4) introducing RMD was deemed sensitive, with patient-specific timing; 5) rare and/or virulent cancers appeared associated with willingness to participate in RMD.
CONCLUSION: Patients, families and cancer clinicians have generally low knowledge of RMD but upon learning about it, deem it valuable for scientific advancement (particularly for rare and virulent cancers), necessary to be carried out with individualized sensitivity to end-of-life issues, and through training programs with involved clinical staff.