Background : Despite significant developments in palliative care in recent decades, we still find important differences in access to and delivery of care in rural Norway.
Objective : The aim of this study was to explore what healthcare professionals consider necessary to provide equality in care for palliative patients in rural areas.
Methods : A qualitative approach with focus group discussions and individual interviews with 52 health professionals was used, starting with 5 uniprofessional focus groups of general practitioners and nurses/cancer nurses, followed by 5 interprofessional groups and 6 individual interviews. Interview transcripts were analyzed thematically.
Results : We found local variations in organization, competence and access to palliative care, and challenging geographical conditions. It was essential to be proactive, flexible and willing to go the extra mile, but this may conceal the need for a stronger focus on competence and organization of palliative care. Access to written guidelines and practical tools was important, as was forming palliative teams for particular situations.
Conclusions : palliative care needs strengthening in rural areas, and increased competence for all healthcare professionals is vital to increase equality in care. Geographical conditions require locally adapted solutions. Access to guidelines and interprofessional collaboration are essential.
Implications for Practice : Rural palliative care needs in Norway are improving, as exemplified by at least 1 cancer nurse assigned to each local authority, and access to guidelines and palliative tools and interprofessional collaboration.
Objectives: To map current practice regarding discussions around resuscitation across England and Scotland in patients with cancer admitted acutely to hospital and to demonstrate the value of medical students in rapidly collecting national audit data.
Methods: Collaborators from the Macmillan medical student network collected data from 251 patient encounters across eight hospitals in England and Scotland. Data were collected to identify whether discussion regarding resuscitation was documented as having taken place during inpatient admission to acute oncology. As an audit standard, it was expected that all patients should be invited to discuss resuscitation within 24 hr of admission.
Results: Resuscitation discussions were had in 43.1% of admissions and of these 64.0% were within 24 hr; 27.6% of all admissions. 6.5% of patients had a “do not attempt resuscitation” order prior to admission with a difference noted between patients receiving palliative and curative treatment (8.5% and 0.39%, respectively, p < .05). Discussions regarding escalation of care took place in only 29.3% of admissions.
Conclusions: These data highlight deficiencies in the number of discussions regarding resuscitation that are being conducted with cancer patients that become acutely unwell. It also demonstrates the value of medical student collaboration in rapidly collecting national audit data.
Caregiving and bereavement outcomes are strongly influenced by socio-cultural context. Past research has found higher levels of caregiver burden and psychological morbidity in Portuguese compared to Brazilian caregivers. This study compared Brazilian and Portuguese family caregivers in palliative care to identify differences in psychological morbidity and caregiver burden and their relationship with psychosocial factors such as sociodemographic variables, circumstances of end-of-life care and dying, social support, family functioning, and perception of quality of care. Prospective data were collected from convenience samples of family caregivers in Brazil (T0 n = 60; T1 n = 35) and Portugal (T0 n = 75; T1 n = 29) at two separate time points—during caregiving (T0), and during the first two months of bereavement (T1). The study samples consisted mostly of women, offspring, and spouses. In both countries, family caregivers devoted most of their day to taking care of their sick relatives and reported a lack of practical support. Portuguese caregivers had higher levels of burden than Brazilian caregivers, and in both populations a greater burden was associated with more psychopathological symptoms. Higher caregiver burden among Portuguese caregivers was associated with the circumstances of death and the perceived lack of emotional support. Among Portuguese caregivers, symptomatology persisted during bereavement, reaching significantly higher levels of anxiety, somatization, and peritraumatic symptoms compared to the Brazilian sample. These results show differences between family caregiver samples in Portugal and Brazil during the bereavement process. Understanding the underlying cultural patterns and mechanisms requires future research.
Objective: this metaresearch of the clinicaltrials.gov database aims to evaluate how clinical research on palliative care is conducted within the setting of advanced cancer.
Methods: clinicaltrials.gov was searched to identify registered studies recruiting patients with cancer, and investigating issues relevant to palliative care. The European Organisation for Research and Treatment of Cancer QLQ-C15-PAL (Quality of Life in palliative cancer care patients) questionnaire was taken into account to define the research domains of interest. Studies investigating cancer-directed therapy, management of cancer treatment-related adverse events and diagnostic tests were excluded. Publication status was crosschecked using PubMed.
Results: Of 3950 identified studies, 514 were included. The most frequent reason for exclusion was cancer-directed therapy (2491). In 2007–2012, 161 studies were registered versus 245 in 2013–2018. Included studies were interventional (84%) or observational (16%). Most studies were monocentric (60%), sponsored by academia (79%), and conducted in North America (57%) or Europe (25%). Seventy-nine per cent of studies evaluated a heterogeneous population (>1 tumour type). Interventional studies most frequently investigated systemic drugs (34%), behavioural interventions (29%) and procedures for pain (24%). Pain, quality of life and physical function were the most frequently studied research domains (188, 95 and 52 studies, respectively). The most applied primary outcome measures were efficacy/symptom control (61%), quality of life (14%) and feasibility (12%). Only 16% of the closed studies had published results in PubMed.
Conclusions: Our study describes the heterogeneous landscape of studies conducted to address the issues of patients with advanced cancer in palliative care. Albeit the observed increase in the number of studies over the last decade, the generalisation of the results brought by the existing trials is limited due to methodological issues and lack of reporting. A greater effort is needed to improve clinical research that supports evidence-based palliative cancer care.
Coronavirus-19 disease (COVID-19) has quickly spread to cause a global pandemic, and produces a spectrum of disease from mild respiratory illness to severe acute respiratory distress syndrome. Current estimates indicate that 15% of patients with COVID-19 will develop severe disease, and 5 to 10% will require intensive care-level support. In certain scenarios, escalation of life-sustaining therapies (defined as intubation, mechanical ventilation,vasopressor support, and/or hemodialysis) will either not be within the patient’s goals of care, or will unfortunately be unsuccessful. Overall mortality risk from COVID-19is estimated to be between 3 and 5%.
While the whole population is at risk from infection with the coronavirus (SARS-CoV-2), older people – often frail and subject to multimorbidity – are at highest risk for severe and fatal disease. Experience from Italy shows a median age at death of 79 years for men and 82 for women. Severe illness with an uncertain outcome and end-of-life situations call for good palliative care for the patients concerned. The Association for Geriatric Palliative Medicine (FGPG) promotes the integration of a palliative care approach and skills into the care of elderly and very elderly people – both in the inpatient setting and at home. The current pandemic and the publication of the SAMS Guidelines “COVID-19 pandemic: triage for intensive-care treatment under resource scarcity” have prompted the FGPG to prepare these recommendations for practice.
Opioid addiction, if not well diagnosed and treated, can be a significant challenge for optimal pain management even in cancer patients. To date there is no definitive pharmacological standard of care for treating addiction, especially in this setting of patients. We present a clinical case series of three opioid-addicted advanced cancer patients, effectively treated with haloperidol, a well-known first-generation typical antipsychotic.
Background: Providing end of life care (EoLC) is an important aspect of primary care, which reduces the risk of hospital admission for most patients. However, general practitioners (GPs) seem to have low confidence in their ability to provide EoLC. Little is known about an adequate volume and kind of training in EoLC among GP trainees.
Methods: We performed a before-after comparison in all post-graduate GP trainees who were registered in the vocational training program (KWBW VerbundweiterbildungPLUS). They were offered participation within a two-day seminar focussing on palliative care in 2017. Those who attended the seminar (intervention group I) completed a paper-based questionnaire directly before the intervention (T1) and 6 months after (T2). None-attendees (group C) were also asked to fill out the questionnaire once. The questionnaire covered previous experiences in palliative care, self-assessment of competencies in EoLC in the organisation of patient care as well as in control of symptoms, attitudes towards death and caring for dying patients and questions about GPs’ role in EoLC.
Results: In total, 294 GP trainees (I: n = 219; C: n = 75) participated in the study. Of those, more than 90% had previously gained experience in EoLC mainly during vocational training in the hospital rotation. Around a third had previously gained competencies in EoLC in medical school. Between groups I (T1) and C no significant differences were observed in socio-demographic characteristics, pre-existing experience or overall expertise. At T2, 75% of participants of group I declared they have extended their competencies in EoLC after the intervention and 70% classified the intervention as helpful or very helpful. Overall, they rated their competencies significantly higher than at T1 (p < 0.01). In detail, competencies in organisation of EoLC and competencies in handling of symptoms significantly improved (p < 0.01). Due to the intervention, 66% could reflect their attitudes towards dying, death and grief and 18% changed their attitudes. Group I highlighted palliative care as one of GPs tasks (Likert 4.47/5, SD 0.75).
Conclusions: The intervention fostered personal competencies, understanding and self-confidence in EoLC among GP trainees. This is crucial for the aim to broadly provide EoLC.
Background: Socioeconomic inequalities in access to, and utilization of medical care have been shown in many jurisdictions. However, the extent to which they exist at end-of-life (EOL) remains unclear.
Methods: Studies in MEDLINE, EMBASE, CINAHL, ProQuest, Web of Science, Web of Knowledge, and OpenGrey databases were searched through December 2019 with hand-searching of in-text citations. No publication date or language limitations were set. Studies assessing SES (e.g. income) in adults, correlated to EOL costs in last year(s) or month(s) of life were selected. Two independent reviewers performed data abstraction and quality assessment, with inconsistencies resolved by consensus.
Results: A total of twenty articles met eligibility criteria. Two meta-analyses were performed on studies that examined total costs in last year of life – the first examined costs without adjustments for confounders (n = 4), the second examined costs that adjusted for confounders, including comorbidities (n = 2). Among studies which did not adjust for comorbidities, SES was positively correlated with EOL costs (standardized mean difference, 0.13 [95% confidence interval, 0.03 to 0.24]). However, among studies adjusting for comorbidities, SES was inversely correlated with EOL expenditures (regression coefficient, -$150.94 [95% confidence interval, -$177.69 to -$124.19], 2015 United States Dollars (USD)). Higher ambulatory care and drug expenditure were consistently found among higher SES patients irrespective of whether or not comorbidity adjustment was employed.
Conclusion: Overall, an inequality leading to higher end-of-life expenditure for higher SES patients existed to varying extents, even within countries providing universal health care, with greatest differences seen for outpatient and prescription drug costs. The magnitude and directionality of the relationship in part depended on whether comorbidity risk-adjustment methodology was employed.
Background: Malnutrition worsens health-related quality of life (HRQoL) and the prognosis of patients with advanced cancer. This study aimed to assess the clinical benefits of parenteral nutrition (PN) over oral feeding (OF) for patients with advanced cancer cachexia and without intestinal impairment.
Material and Methods: In this prospective multicentric randomized controlled study, patients with advanced cancer and malnutrition were randomly assigned to optimized nutritional care with or without supplemental PN. Zelen's method was used for randomization to facilitate inclusions. Nutritional and performance status and HRQoL using the European Organization for Research and Treatment of Cancer QLQ-C15-PAL questionnaire were evaluated at baseline and monthly until death. Primary endpoint was HRQoL deterioration-free survival (DFS) defined as a definitive deterioration of =10 points compared with baseline, or death.
Results: Among the 148 randomized patients, 48 patients were in the experimental arm with PN, 63 patients were in the control arm with OF only, and 37 patients were not included because of early withdrawal or refused consent. In an intent to treat analysis, there was no difference in HRQoL DFS between the PN arm or OF arm for the three targeted dimensions: global health (hazard ratio [HR], 1.31; 95% confidence interval [CI], 0.88–1.94; p = .18), physical functioning (HR, 1.58; 95% CI, 1.06–2.35; p = .024), and fatigue (HR, 1.19; 95% CI, 0.80–1.77; p = .40); there was a negative trend for overall survival among patients in the PN arm. In as treated analysis, serious adverse events (mainly infectious) were more frequent in the PN arm than in the OF arm (p = .01).
Conclusion: PN improved neither HRQoL nor survival and induced more serious adverse events than OF among patients with advanced cancer and malnutrition.
Clinical trial identification number. NCT02151214
Implications for Practice: This clinical trial showed that parenteral nutrition improved neither quality of life nor survival and generated more serious adverse events than oral feeding only among patients with advanced cancer cachexia and no intestinal impairment. Parenteral nutrition should not be prescribed for patients with advanced cancer, cachexia, and no intestinal failure when life expectancy is shorter than 3 months. Further studies are needed to assess the useful period with a potential benefit of artificial nutrition for patients with advanced cancer.
Background: early involvement of palliative care and advance care planning improves quality of life outcomes and survival for patients with advanced lung cancer, however there are barriers to implementation.
Aims and Methods: A single-centre prospective audit reviewing “Goals of Care” (GOC) form completion and palliative care referrals in an oncology clinic was undertaken with the aim of increasing GOC completion and palliative care referrals for patients with advanced lung cancer. Involved physicians attended a communication skills course and then received a communication-priming interventions. Clinicopathological factors associated with GOC completion and palliative care referral were explored.
Results: 84 patients receiving palliative treatment for advanced lung cancer were enrolled. Clinicopathological factors, such as poorer performance status were associated with higher likelihood of GOC completion (p = 0.018) prior to the intervention. Male sex (p = 0.023), absence of a sensitising EGFR mutation or ALK rearrangement (p = 0.017), type of systemic therapy (p = 0.031) and poorer performance status (p < 0.001) were associated with higher likelihood of palliative care referral. The intervention improved GOC completion (RR 1.29 p = 0.004), however this was not sustained in a follow-up audit (RR 0.98 p = 0.92) and there was no change in palliative care referral rate (RR 2.5, p = 0.16). Predictors of palliative referral following clinical review included age (RR 1.16, p = 0.001), male sex (RR 14.2, p = 0.02) and poorer performance status (RR 1.76, p < 0.001).
Conclusion: communication-priming interventions can improve GOC completion for patients with advanced lung cancer. Further investigation is needed to pursue sustainable options for managing this complex patient group and improve guideline-adherence and patient care.
Purpose: Life-sustaining treatment (LST) decisions for patients and caregivers at the end-of-life (EOL) process are supported by the “Act on Hospice and Palliative Care and Decisions on LST for Patients at the EOL,” enforced in February 2018. It remains unclear whether the act changes EOL decisions and LST implementation in clinical practice. For this study, we investigated patients’ decision-making regarding LSTs during the EOL process since the act’s enforcement.
Materials and Methods: Retrospective reviews were conducted on adult patients who were able to decide to terminate LST and died at Seoul National University Hospital between February 5, 2018, and February 5, 2019. We examined demographics, who made the decisions, the type and date of documentation confirming patient's LST, and whether the LST was withheld or withdrawn.
Results: Of 809 patients who were enrolled, 29% (n=231) completed forms regarding LST themselves, and 71% (n=578) needed family members to decide. The median time from confirmation of the EOL process to death and from the Advance Statement to death were 2 and 5 days, respectively (both ranges, 0 to 244). In total, 90% (n=727) of patients withheld treatment, and 10% (n=82) withdrew it. We found a higher withdrawal rate when family members made the decisions (13.3% vs. 1.7%, p < 0.001).
Conclusion: After the act’s enforcement, withdrawing LSTs became lawful and self-determination rates increased. Family members still make 71% of decisions regarding LSTs, but these are often inconsistent with the patients’ wishes; thus, further efforts are needed to integrate the new act into clinical practice.
Background: The McGill Quality of Life Questionnaire - Expanded (MQOL-E) and the Quality of Life in Life-Threatening Illness-Family Carer/Caregiver version (QOLLTI-F) are developed for use with patients facing the end of life and their family carers, respectively. They are also developed for possible use as companion instruments. Contemporary measurement validity theory places emphasis on response processes, i.e. what people feel and think when responding to items. Response processes may be affected when measurement instruments are translated and adapted for use in different cultures. The aim of this study was to translate and examine content validity and response processes during completion of MQOL-E and QOLLTI-F version 2 (v2) among Swedish patients with life-threatening illness and their family carers.
Methods: The study was conducted in two stages (I) translation and adaptation (II) examination of content validity and response processes using cognitive interviews with 15 patients and 9 family carers. Participants were recruited from the hemodialysis unit, heart clinic, lung clinic and specialized palliative care of a Swedish county hospital. Patients had life-threatening illness such as advanced heart failure, advanced chronic obstructive pulmonary disease, end-stage kidney disease or advanced cancer. Patients were outpatients, inpatients or receiving home care.
Results: Patients and family carers respectively believed that the items of the MQOL-E and QOLLTI-F v2 reflect relevant and important areas of their quality of life. Although some items needed more time for reflection, both instruments were considered easy to understand. Some changes were made to resolve issues of translation. Participants expressed that reflecting on their situation while answering questions was valuable and meaningful to them, and that responding was an opportunity to express feelings.
Conclusions: The results of response processes pertaining to the Swedish translations of both MQOL-E and QOLLTI-F v2 contribute evidence regarding content validity, linguistic equivalence and cultural appropriateness of the translated instruments. In addition, results show that the instruments may support conversations on matters of importance for quality of life between patients and/or family carers and health care professionals. Further research is needed to study the psychometric properties of Swedish translations.
Objective: This study sought to understand the patients’ perspective of what contributes to an absence of discussions of sexual orientation (SO), gender identity (GI), and sexual health in cancer care.
Methods: Patients were recruited from oncology, gynecology, and a gender transition clinic to participate in semistructured interviews, which were analyzed with qualitative methods.
Results: A total of 25 patients were interviewed, shedding light on 2 themes. The first was that these conversations are important but infrequent. One patient explained, “…. we know people who have had sex changes…[they] would have appreciated that question.” In response to whether sexual health was ever brought up, one patient responded, “No doctor ever has.” Patients described unaddressed issues: “There have been times, you know, we’ve wondered if it was okay to make love.” The second theme consisted of 4 pragmatic, patient-provided points to facilitate discussions: (1) implementation of a scale of 1 to 10 (with 10 being comfortable) to first gauge patients’ comfort in talking about SO, GI, and sexual health; (2) having the health-care provider explore the topic again over-time; (3) making sure the health-care provider is comfortable, as such comfort appears to enhance the patient’s comfort (“I have a doctor here, a female doctor, who just matter of fact will ask if I get erections and so on because of the medication she’s giving me);” and (4) eliminating euphemisms (one patient stated, “I don’t know what you mean by ‘sexual health’.”).
Conclusion: Oncology health-care providers have a unique opportunity and responsibility to address SO, GI, and sexual health.
Objectives: An increasing number of children are living with complex chronic diseases (CCDs) due to medical advances. Despite a need for code status discussions (CSDs), there is great variability in the frequency and documentation of such conversations. The objective was to identify gaps in the documentation of CSDs within the electronic health record (EHR), focusing on patients with CCDs.
Methods: This was a retrospective review of all patients admitted from the emergency department of a tertiary care children's hospital in 2016. An EHR query using the Apache Hadoop cluster and manual review identified documentation of CSDs, including (1) code status orders, (2) advance directives, and (3) CSDs in provider notes. Patient complexity was stratified using the Pediatric Medical Complexity Algorithm 3.0. Comparative analysis was performed using chi-square, Kruskal–Wallis tests and multivariable logistic regression.
Results: There were 12,648 unique patients of whom 4157 (32.9%) had CCD. Only 209 (1.7%) patients had a code status documented, of whom 200 (95.7%) had CCD. Of 528 (4.2%) patients =18 years of age, 428 (81.1%) had CCD and only 65 (12.3%) had CSDs. Palliative care consultation increased odds of CSDs (OR: 21.4, 95% CI: 13.8–33.2, p < 0.0001), whereas African American race decreased odds of CSDs (OR: 0.42, 95% CI: 0.27–0.64, p < 0.0001).
Conclusions: Among admitted pediatric patients, most do not have documentation of CSDs, including those with CCD and patients =18 years of age. Improvements in both frequency and consistency of CSD documentation are needed to inform the family-centered care of patients living with CCDs.
Purpose: We studied the prevalence of medications of questionable benefit in the last 6 months of life among older nursing home residents with and without dementia in Germany.
Methods: a retrospective cohort study was conducted on claims data from 67,328 deceased nursing home residents aged 65+ years who were admitted between 2010 and 2014. We analyzed prescription regimens of medications of questionable benefit in the 180–91-day period and the 90-day period prior to death for residents with dementia (n = 29,052) and without dementia (n = 38,276). Factors associated with new prescriptions of medications of questionable benefit prior to death were analyzed using logistic regression models among all nursing home residents and stratified by dementia.
Results: A higher proportion of nursing home residents with dementia were prescribed at least one medication of questionable benefit in the 180–91-day (29.6%) and 90-day (26.8%) periods prior to death, compared with residents without dementia (180–91 days, 22.8%; 90 days, 20.1%). Lipid-lowering agents were the most commonly prescribed medications. New prescriptions of medications of questionable benefit were more common among residents with dementia (9.8% vs. 8.7%). When excluding anti-dementia medication, new prescriptions of these medications were more common among residents without dementia (6.4% vs. 8.0%). The presence of dementia (odds ratio [OR] 1.40, 95% confidence interval [95%CI] 1.32–1.48) and excessive polypharmacy were associated with new prescriptions of medications of questionable benefit prior to death (OR 4.74, 95%CI 4.15–5.42).
Conclusion: even when accounting for anti-dementia prescriptions, the prevalence of nursing home residents with dementia receiving medications of questionable benefit is considerable and may require further attention.
Background: Outcome measurement is an essential part of the evaluation of palliative care and the measurements need to be reliable, valid and adapted to the culture in which they are used. The Integrated Palliative Outcome Scale (IPOS) is a widely used tool for assessing personal-level outcomes in palliative care. The aim of this study was to provide Czech version of IPOS and assess its psychometric properties.
Methods: Patients receiving palliative care in hospice or hospitals completed the IPOS. The reliability of Czech IPOS was tested with Cronbach alpha (for internal consistency), the intraclass correlation coefficient for total IPOS score and weighted Kappa (for test-retest reliability of individual items). Factor analysis was used for elucidating the construct (Exploratory Factor Analysis). Convergent validity was tested with correlation analysis (Spearman correlation) in a part of the sample, who completed also the Edmonton Symptom Assessment System (ESAS) and the Palliative Performance Scale (PPS).
Results: The sample consisted of 140 patients (mean age 72; 90 women; 81% oncological disease). The Cronbach alpha was 0.789; intraclass correlation was 0.88. The correlations of IPOS with ESAS was R = 0.4 and PPS R = - 0.2. Exploratory factor analysis revealed a 2-factor solution on our data. The first factor covers emotional and information needs and the second factor covers physical symptoms.
Conclusion: Czech IPOS has very good reliability regarding both internal consistency and test-retest reliability. Together with an item analysis results, we can conclude that the Czech adaptation of the tool was successful. The convergent validity needs to be assessed on the larger sample and the proposed 2-factor internal structure of the questionnaire has to be confirmed by using CFA.
Objectives: Research suggests that clinicians are not very accurate at prognosticating in palliative care. The ‘horizon effect’ suggests that accuracy ought to be better when the survival of patients is shorter. The aim of this study was to determine the accuracy of specialist palliative care clinicians at identifying which patients are likely to die within 72 hours.
Design In a secondary data analysis of a prospective observational study, specialist palliative care doctors and nurses (in a hospice and a hospital palliative care team) provided survival predictions (yes/no/uncertain) about which patients would die within 72 hours.
Results: Survival predictions were obtained for 49 patients. A prediction from a nurse was obtained for 37/49 patients. A prediction from a doctor was obtained for 46/49 patients. In total, 23 (47%)/49 patients actually died within 72 hours of assessment. Nurses accurately predicted the outcome in 27 (73%)/37 cases. Doctors accurately predicted the outcome in 30 (65%)/46 cases. When comparing predictions given on the same patients (27 [55%]/49), nurses were slightly better at recognising imminent death than doctors (positive predictive value (the proportion of patients who died when the clinician predicted death)=79% vs 60%, respectively). The difference in c-statistics (nurses 0.82 vs doctors 0.63) was not significant (p=0.13).
Conclusion: Even when patients are in the terminal phase and close to death, clinicians are not very good at predicting how much longer they will survive. Further research is warranted to improve prognostication in this population.
Xerostomia remains one of the most common and impactful side effects associated with radiotherapy for head and neck malignancies. With improvements in oncologic therapy and an improved prognosis for patients with head and neck squamous cell carcinoma (HNSCC) overall, the long-standing effects of therapy have become even more significant. Recent efforts have primarily focused on prevention of this morbidity through technological advances, reductions in radiotherapy fields, and radioprotectants. The promises of de-intensified strategies and proton radiation warrant ongoing investigation. However, palliative care for and active management of xerostomia before, during, and after treatment deserve further attention and research to define optimal approaches.
Objective: Women with advanced gynecologic cancer and malignant bowel obstruction (MBO) undergo repeated hospitalizations, experience feelings of isolation and abandonment, and often die in acute settings. Innovative outpatient models of care are needed to address the unmet needs of this population at the end-of-life. We implemented a novel supported self-management (SMS) program focused on increasing patients' skill and confidence in managing MBO proactively in the ambulatory setting.
Methods: We performed a qualitative descriptive study embedded in a prospective single-arm evaluative trial (Clinicaltrials.gov ID: NCT03260647) to understand the impact of this program on patients' sense of support, degree of distress, quality of care, and capacity to self-manage. Semi-structured interviews were completed and analysed using the Chronic Care Model as a theoretical framework. Data saturation was confirmed after 15 interviews.
Results: Fifteen patients (age range: 47–82) with diagnoses of advanced ovarian, endometrial, and cervical cancer were interviewed; 10 had died by end of follow-up, with a median interval from interview to death of 5 months. Patients were able to self-manage the: (i) medical aspects; (ii) psychological consequences, and (iii) changes in life roles and expectations resulting from their condition. Patients felt greatly supported, less isolated, and secure in their knowledge and ability to access care due to SMS. While patients understood their disease was not curative they did not fully appreciate that MBO signalled a significantly poorer prognosis.
Conclusion: Outpatient SMS interventions can be successfully implemented even for rapidly fatal conditions at the end-of-life and offer significant benefit to gynecologic cancer patients with MBO. Counselling should focus on the specific trajectory of MBO, and early palliative care referrals should be standard practice.