PURPOSE: This study aimed to investigate the supportive care needs of family caregivers (FCs) of advanced cancer patients and their support service use at the beginning of specialist inpatient palliative care (SIPC), near the patient's death, and during bereavement.
METHODS: FCs reported their needs using the Family Inventory of Needs (FIN), along with their utilization of psychosocial and bereavement support services at the beginning (N = 232) and 6-9 months after SIPC (N = 160).
RESULTS: At the beginning of SIPC, mean of 16.9 of 20 needs were reported to be highly important, and 12.2 were reported to be met. At the time of the patient's death, 16.8 needs were highly important, and 13.8 were met. At both time points, the highest ranked need was related to information about changes in the patient's condition (100% vs. 99%), and the most frequently unmet need was related to feeling hope (73% vs. 71%). Multivariate linear regression analysis revealed a low education level to be consistently related to a greater number of highly important needs. Higher satisfaction with care and better social support was related to a greater number of met needs. Twenty-five percent of FCs had accessed at least one psychosocial support service prior to SIPC, and 30% had done so during bereavement. Among non-users of support services, > 75% indicated sufficient informal support as a barrier to service use.
CONCLUSIONS: The findings offer a useful guide for adequately addressing FCs' needs in an effort to optimize FC support. However, only a subgroup of the FCs used support services. Better information and provision of tailored services might improve FCs' situations in the future.
OBJECTIVES: End-of-life hospitalisations may not be associated with improved quality of life. Studies indicate differences in end-of-life care for cancer and non-cancer patients; however, data on hospital utilisation are sparse. This study aimed to compare end-of-life hospitalisation and place of death among patients dying from cancer, heart failure or chronic obstructive pulmonary disease (COPD).
DESIGN: A nationwide register-based cohort study.
SETTING: Data on all in-hospital admissions obtained from nationwide Danish medical registries.
PARTICIPANTS: All decedents dying from cancer, heart failure or COPD disease in Denmark between 2006 and 2015.
OUTCOME MEASURES: Data on all in-hospital admissions within 6 months and 30 days before death as well as place of death. Comparisons were made according to cause of death while adjusting for age, sex, comorbidity, partner status and residential region.
RESULTS: Among 154 235 decedents, the median total bed days in hospital within 6 months before death was 19 days for cancer patients, 10 days for patients with heart failure and 11 days for patients with COPD. Within 30 days before death, this was 9 days for cancer patients, and 6 days for patients with heart failure and COPD. Compared with cancer patients, the adjusted relative bed day use was 0.65 (95% CI, 0.63 to 0.68) for heart failure patients and 0.68 (95% CI, 0.66 to 0.69) for patients with COPD within 6 months before death. Correspondingly, this was 0.65 (95% CI, 0.63 to 0.68) and 0.70 (95% CI, 0.68 to 0.71) within 30 days before death.Patients had almost the same risk of dying in hospital independently of death cause (46.2% to 56.0%).
CONCLUSION: Patients with cancer, heart failure and COPD all spent considerable part of their end of life in hospital. Hospital use was highest among cancer patients; however, absolute differences were small.
While the strict regulations in hospital in Hong Kong effectively controlled the
outbreaks of COVID-19, they caused challenges in the care of our hospitalized cancer patients. Four clinical cases based on true encounter during the COVID-19 period with mitigations were summarised. These four cases reflected the unanticipated impacts of the extreme measures and
highlighted the deficiencies of our existing system. The pandemics offered us opportunities to explore new ways to improve our cancer care, especially concerning the psychological support to both patients and caretakers.
BACKGROUND: Antimicrobials are frequently prescribed to terminally-ill patients with cancer; however, physicians' practice patterns regarding antimicrobial use vary widely. This study aimed to systematically identify factors that determine physicians' attitudes toward the management of infectious diseases in terminally-ill patients with cancer.
METHODS: A nationwide cross-sectional survey involving 600 oncologists, 600 infectious diseases physicians, 600 palliative care physicians, and 220 home care physicians was conducted between November 2017 and January 2018. The primary endpoint was physicians' attitudes toward the management of infectious diseases in terminally-ill patients with cancer with a few weeks of prognosis. Physicians' beliefs regarding management of infectious diseases as well as physician-perceived 'good death' were also assessed (1=strongly disagree-6=strongly agree).
RESULTS: There were 895 (44.3%) analyzable response, and average scores of physicians' attitudes ranged between 2.69 and 4.32 In total, 241 (27%; 95%CI=24-30) to 691 (78%; 95%CI=75-81) respondents showed proactive attitudes toward various infectious diseases management. In linear regression analysis, determinants of proactive attitudes included: physicians' belief that examination and treatment will improve quality of life and prognosis and reduce suffering (ß=0.32, t=9.99, p=0.00); greater physician-perceived importance on receiving enough treatment (ß=0.09, t=2.88, p=0.00) and less importance on dying a natural death (ß=-0.07, t=-2.14, p=0.03) for a 'good death'; working at a tertiary care hospital (ß=0.16, t=4.40, p=0.00); and not being a home care physician (ß=-0.20, t=-5.51, p=0.00) or palliative care physician (ß=-0.12, t=-3.64, p=0.00).
CONCLUSIONS: Physicians have divergent attitudes toward the management of infectious diseases in terminally-ill patients with cancer. Reflection by physicians on their own beliefs and perceptions regarding infectious disease management and a 'good death' may help provide the best end-of-life care.
BACKGROUND/AIM: Previous studies have shown discrepancies between patient's desired and actual death place. As planning of family support and involvement of palliative home care teams seem to improve the chance to meet patients preferences, geographical availability of specialized palliative home care could influence place of death.
PATIENTS AND METHODS: Data of patients diagnosed and deceased between January 2011 until December 2014 with lung, brain, colorectal, breast and prostate cancer was collected from Swedish national registers and multiple regression analyses were performed.
RESULTS: Patients with lung, brain, colorectal, and prostate cancer who resided in rural municipalities had a higher likelihood of dying at home than dying in hospital settings, compared to those who lived in urban areas.
CONCLUSION: Patients in Sweden, with the exception of breast cancer patients, have a higher likelihood of home death than inpatient hospital death when residing in rural areas compared to when residing in urban areas.
INTRODUCTION: Patients with cancer are at high risk of developing pressure ulcers at the end of life as a result of their underlying condition or cancer treatment. There are many guidelines which set out best practice with regard to end-of-life skin care. However, the complexity of palliative cancer care often means that it is challenging for nurses to make the appropriate person-centred decisions about end-of-life skin care. This study seeks to explore the perceived importance that nurses place on different factors in their end-of-life skin care for patients with cancer. The utility, face validity and content validity of a prototype decision-making tool for end-of-life skin care will also be evaluated.
METHODS AND ANALYSIS: A mixed-method design will be used to gather data from primary and secondary care nurses working in different hospitals and local authority areas across Wales. Clinical vignettes will be used to gather qualitative and quantitative data from nurses in individual interviews. Qualitative data will be subject to thematic analysis and quantitative data will be subject to descriptive statistical analysis. Qualitative and quantitative data will then be synthesised, which will enhance the rigour of this study, and pertinently inform the further development of an end-of-life skin care decision-making tool for patients with cancer.
ETHICS AND DISSEMINATION: Ethical approval to undertake the study has been granted by Cardiff University School of Healthcare Sciences Research Governance and Ethics Screening Committee. Informed consent will be obtained in writing from all the participants in this study. The results of this study will be disseminated through journal articles, as well as presentations at national and international conferences. We will also report our findings to patient and public involvement groups with an interest in improving cancer care, palliative care as well as skin care.
PURPOSE: Investigate whether Life Review Therapy and Memory Specificity Training (LRT-MST) targeting incurably ill cancer patients may also have a beneficial effect on caregiving burden, symptoms of anxiety and depression, and posttraumatic growth of the informal caregivers.
METHODS: Data was collected in the context of a randomized controlled trial (RCT) (secondary analyses) on the effect of LRT-MST among incurably cancer patients. Informal caregivers of participating patients were asked to complete outcome measures at baseline (T0), post-intervention (T1), and 1-month follow-up (T2): caregiver burden (caregivers reaction assessment scale (CRA)), symptoms of anxiety and depression (hospital anxiety and depression scale), and posttraumatic growth (posttraumatic growth inventory). Linear mixed models (intention to treat) were used to assess group differences in changes over time. Effect size and independent samples t tests were used to assess group differences at T1 and T2.
RESULTS: In total, 64 caregivers participated. At baseline, 56% of the caregivers experienced anxiety and 30% depression. No significant effect was found on these symptoms nor on posttraumatic growth or most aspects of caregiver burden. There was a significant effect of LRT-MST on the course of self-esteem (subscale CRA) (p = 0.013). Effect size was moderate post-intervention (ES = - 0.38, p = 0.23) and at 3-month follow-up (ES = 0.53, p = 0.083).
CONCLUSIONS: Many caregivers of incurably ill cancer patients experience symptoms of anxiety and depression. LRT-MST does not improve symptoms of depression and anxiety, negative aspects of caregiver burden, or posttraumatic growth. LRT-MST may have a protective effect on self-esteem of informal caregivers (positive aspect of caregiver burden).
OBJECTIVE: To determine factors associated with the utilization of palliative care (PC) in patients with metastatic gynecologic cancer who died while hospitalized.
METHODS: Data were abstracted from the National Inpatient Sample database for patients with cervical, uterine, and ovarian cancers from 2005 to 2011. Chi-squared and logistic regression models were used for statistical analyses.
RESULTS: Of 4559 women (median age: 65 years; range: 19-102), 1066 (23.4%) utilized PC. Patients were 24.9% low socioeconomic status (SES), 23.9% low-middle, 23.7% middle-high, and 25.1% high SES. Medicare, Medicaid, and private insurance coverage were listed at 46.2%, 37.5%, 11.3% of patients; 36.2%, 21.1%, 18.1%, 24.6% were treated in the South, West, Midwest, and Northeast. Over the 7 year study period, the use of PC increased from 12% to 45%. Older age (odds ratio [OR]: 1.36; 95% CI: 1.11-1.68; P = .003), high SES (OR: 1.41; 95% CI: 1.12-1.78; P = .003), more recent treatment (OR: 9.22; 95% CI: 6.8-12.51; P < .0001), private insurance (OR: 1.81; 95% CI: 1.46-2.25; P < .001), and treatment at large-volume hospitals (OR: 1.36; 95% CI: 1.04-1.77; P = .02), Western (OR: 2.00; 95% CI: 1.61-2.49; P < .001) and Midwestern hospitals (OR: 1.35; 95% CI: 1.08-1.68; P = .001) were associated with higher utilization of PC.
CONCLUSIONS: The use of inpatient PC for patients with gynecologic cancer increased over time. The lower utilization of PC for terminal illness was associated with younger age, lower SES, government-issued insurance coverage, and treatment in Southern and smaller volume hospitals, and warrants further attention.
BACKGROUND/OBJECTIVES: Hospice care confers well-documented benefits to patients and their families, but it is underutilized. One potential reason is inadequate family support to make end-of-life decisions and care for older adults on hospice at home. We assessed the association between amount of family support and hospice use among a population of decedents and among specific illness types.
DESIGN: Prospective cohort study using the National Health and Aging Trends Study waves 2011 to 2017, linked to Medicare claims data.
SETTING: Contiguous United States.
PARTICIPANTS: A total of 1,868 NHATS decedents.
MEASUREMENTS: Outcome variable was 1 day or longer of hospice. Family caregiving intensity was measured by self-reported hours of care per week and number of caregivers. Covariates included probable dementia status and other demographic, clinical, and functional characteristics.
RESULTS: At the end of life, hours of family caregiving and numbers of helpers vary widely with individuals with dementia receiving the most hours of unpaid care (mean = 64.5 hours per week) and having 2.4 unpaid caregivers on average. In an adjusted analysis, older adults with cancer receiving 40 hours and more of unpaid care/week as compared with fewer than 6 hours per week were twice as likely to receive hospice care at the end of life (odds ratio = 2.0; 95% confidence interval = 1.0-4.1). This association was not seen among those with dementia or among decedents in general. No significant association was found between number of caregivers and hospice use at the end of life.
CONCLUSION: Older adults at the end of life receive a high number of hours of help at the end of life, many from more than one caregiver, which may shape hospice access. Better understanding of disparities in hospice use can facilitate timely access to care for older adults with a serious illness.
A 74-year-old man presented with recurrent syncope 3 months after definitive surgery for hypopharyngeal cancer. The patient experienced dizziness and severe hypotension on the movement of the neck and head. CT revealed disease recurrence with masses encasing the left internal carotid artery. The patient was diagnosed with vasodepressor type of tumour-induced carotid sinus syndrome (tiCSS) and was referred for palliative intensity-modulated radiotherapy (IMRT). Ten days after the commencement of IMRT (25 Gy in five fractions), the symptoms of tiCSS improved, and there was no re-exacerbation of the symptoms till the patient died 56 days after the commencement of RT. Palliative IMRT was feasible and effective for recurrent malignant tiCSS. Given the fact that palliative IMRT is minimally invasive, this option could be widely adapted for patients with such poor general condition and prognosis.
OBJECTIVES: The purpose of this report is to describe the effect of computed tomography-guided bilateral pudendal nerve cryoablations on pain and time to discharge in the setting of acute hospitalizations secondary to refractory pelvic pain from cancer.
METHODS: Investigators queried the medical record for patients who underwent pudendal nerve cryoablation using the Category III Current Procedural Technology code assignment 0442T or Category I code 64640 for cases prior to 2015. The resulting list was reviewed, and procedures performed on inpatients for intractable pelvic pain related to neoplasm were selected. The final cohort was then analyzed with regard to patient demographics, procedure details, technical success, safety, pain scores, and time to discharge.
RESULTS: Ten patients underwent cryoablation by 3 operators for palliation of painful pelvic neoplasms between June 2014 and January 2019. All probes were satisfactorily positioned and freeze cycles undertaken without difficulty. There were no procedure-related complications or adverse events. The mean difference in pre- and posttreatment worst pain scores was significant (n = 5.20, P = .003). The mean time to discharge following the procedure was 2.3 days.
CONCLUSION: Computed tomography-guided percutaneous cryoablation of the bilateral pudendal nerves may represent a viable option in the setting of acute hospitalization secondary to intractable pain in patients with pelvic neoplasms.
OBJECTIVE: Communication and patient-centred care are important determinants for timely initiation of palliative care. Therefore, we aimed to understand and explain the behaviour "starting a conversation about palliative care with a professional carer" from the perspective of people with incurable cancer.
METHODS: A qualitative study using semi-structured face-to-face interviews with 25 people with incurable cancer: 13 not (yet) receiving palliative care and 12 receiving palliative care; 4 started the conversation themselves. Determinants related to the defined behaviour were matched with concepts in existing behavioural theories.
RESULTS: Both positive and negative stances towards starting a conversation about palliative care with a professional carer were found. Influencing behavioural factors were identified, such as knowledge (e.g. about palliative care), attitude (e.g. association of palliative care with quality of life) and social influence (e.g. relationship with the professional carer). We modelled the determinants into a behavioural model.
CONCLUSION: The behavioural model developed helps to explain why people with incurable cancer do or do not start a conversation about palliative care with their professional carer. By targeting the modifiable determinants of the model, promising interventions can be developed to help patients taken the initiative in communication about palliative care with a professional carer.
Patients with cancer face many difficult decisions and encounter many clinical situations that undermine decisional capacity. For this reason, assessing decision-making capacity should be thought of at every medical encounter. The culmination of variable disease trajectories, following patients to the end of life, use of high-risk treatments, and other weighty personal decisions require attention to patients' ability to engage in decisions. Oncologists develop meaningful relationships with their patients. This familiarity may lead to forgoing the process of diligently assessing a patient's cognitive ability and/or decisional capacity when important decisions need to be made. While the process may feel like it takes place spontaneously, many subtle and overt details are involved with the decisions around cancer care that require pointed questioning and probing. Thus, there are many ways to fall short in determining decisional capacity. Clinicians are inconsistent in their decisional capacity determinations and generally assume more decisional capacity than the patient has. Consult and referral services such as ethics and psychiatry can help with treatment decisions and with assessing underlying psychosocial and psychiatric conditions. Decisional capacity may fluctuate and requires a variable amount of decisional ability depending on the clinical situation; hence, it is time-specific and decision-specific. This review is intended to provide a summary of key components of decisional capacity while highlighting areas in need of clinical refinement.
BACKGROUND: Spiritual care is frequently cited as a key component of hospice care in Taiwanese healthcare and beyond. The aim of this research is to gauge physicians and nurses' self-reported perspectives and clinical practices on the roles of their professions in addressing spiritual care in an inpatient palliative care unit in a tertiary hospital with Buddhist origins.
METHODS: We performed semi-structured interviews with physicians and nurses working in hospice care over a year on their self-reported experiences in inpatient spiritual care. We utilized a directed approach to qualitative content analysis to identify themes emerging from interviews.
RESULTS: Most participants identified as neither spiritual nor religious. Themes in defining spiritual care, spiritual distress, and spiritual care challenges included understanding patient values and beliefs, fear of the afterlife and repercussions of poor family relationships, difficulties in communication, the patient's medical state, and a perceived lack of preparedness and time to deliver spiritual care.
CONCLUSIONS: Our study suggests that Taiwanese physicians and nurses overall find spiritual care difficult to define in practice and base perceptions and practices of spiritual care largely on patient's emotional and physical needs. Spiritual care is also burdened logistically by difficulties in navigating family and cultural dynamics, such as speaking openly about death. More research on spiritual care in Taiwan is needed to define the appropriate training, practice, and associated challenges in provision of spiritual care.
BACKGROUND: The Cancer Home-Life Intervention showed no significant effects, and examination of the processes affecting or inhibiting outcomes is relevant.
AIM: To evaluate the Cancer Home-Life Intervention for its processes of implementation, mechanisms of impact and contextual factors.
DESIGN: Process evaluation conducted alongside the randomised controlled trial, using quantitative and qualitative methods (ClinicalTrials.gov NCT02356627). The Cancer Home-Life Intervention is a tailored, occupational therapy-based programme.
SETTING/PARTICIPANTS: This study took place in participants' homes and at hospital. A total of 113 home-dwelling adults (>=18 years) with advanced cancer who had received the Cancer Home-Life Intervention were included, together with five intervention-therapists.
RESULTS: All 113 participants (100%) received a first home visit; 32 participants (26%) received a second visit; and 4 participants (3%) received a third visit. Median number of delivered intervention components were 3 (interquartile range: 2; 4). Identified barriers for effect included unclear decision process for intervention dosage; participants' low expectations; participants' lack of energy; and insufficient time to adopt new strategies. The trial design constituted a barrier as the intervention could only be provided within a specific short period of time and not when relevant. Intervention components working to solve practical everyday problems, enhance enjoyment and increase a sense of safety were perceived as useful.
CONCLUSION: Future interventions can benefit from inclusion criteria closely related to the intervention focus and clear procedures for when to continue, follow-up and terminate intervention. Decisions about dose and timing may benefit from learning theory by taking into account the time and practice needed to acquire new skills.
BACKGROUND: Research on the patient experience of receiving palliative care across a number of settings is increasing, but the majority of these investigations are situated within the context of developed countries. There is limited research from resource-limited countries, especially with regard to patients with cancer who receive hospice care. The present study explored the lived experience of attending hospice care facilities in South Africa to develop a bottom-up understanding from the perspectives of patients themselves.
METHODS: A qualitative cross-sectional study was designed to examine how patients experienced receiving hospice care We conducted in-depth, semi-structured interviews with thirteen, purposively selected patients living with terminal cancer and receiving in-patient or day care palliative services from a hospice organisation in South Africa. We used inductive thematic analysis to analyse the data.
RESULTS: We identified three themes that reflected a process of transformation that was experienced by participants during their engagement with the hospice services. The first theme describes participants' initial reluctance to be linked to the hospice as a result of the stereotypic perceptions of hospice as being associated with death and dying. The second theme presents the perceived positive impact on patients' physical and psychosocial wellbeing which resulted from the highly valued interactions with staff and other patients as well as patients' engagement with creative activities. The final theme delineates the transformation of hospice into a second 'family' and 'home' and the restoration of an identity that expands beyond the 'sick' role.
CONCLUSIONS: Receiving hospice care that sensitively attends to patients' psychosocial and physical needs helps people to re-create a sense of homeliness within the world, re-orient themselves toward a meaningful life and re-configure their relationship with self. Patient experience of receiving hospice care in South Africa does not appear dissimilar to that reported by patients in resource-rich countries, suggesting underlying commonalities. There is a need for raising awareness and educating the public about what palliative care can offer to those in need. Public health campaigns could help reduce the stigma attached to palliative care, deflect negative perceptions, and communicate the benefits for patients, families and communities in culturally sensitive ways.
Purpose: The aim of this study was to gain more insight into the psychosocial well-being of the recently bereaved spouses who took care of their partners with cancer.
Method: A qualitative study was developed, taking a phenomenological approach. Eleven former caregivers and spouses of patients who died of cancer at, or after, the age of 64, participated in individual in-depth interviews. Only caregivers who were bereaved for a minimum of three months and maximum of one year were interviewed. The analysis of the data was based on the Qualitative Analysis Guide of Leuven.
Results: The first moments of bereavement included feelings of disbelief, regret and relief. A feeling of being overwhelmed during this time was reported by some, others sought distraction from their grief. Loneliness, emotional fluctuations and a sense of appreciation for the support of loved ones were dominant themes. Also, gratitude and the importance of consolation played a role in the participants' well-being. When participants addressed the matter of moving forward in life, most explained how they wanted to keep the memories of their partner alive while rebuilding their lives.
Conclusions: The present study offers insight into the experiences of the bereaved spousal caregiver and highlights the need of social support during the bereavement period. All participants expressed loss-oriented and restoration-oriented coping strategies. Also, loneliness is considered a dominant feeling throughout the bereavement period. Social contact can ease these feelings of loneliness through providing either distraction or possibilities to share the burden. This paper emphasized the importance of improving access to healthcare professionals during bereavement.
Objectives: This study aimed to evaluate the trends of utilization of palliative care and aggressive end-of-life care for patients who died of cancers and those who died of non-cancer diseases in hospitals.
Methods: The medical records of patients who died in a public hospital due to cancer or other diseases were reviewed. The proportion of those who received palliative care, admitted to intensive care unit (ICU) within 30 days of death, died in ICU, and received cardiopulmonary resuscitation (CPR) within 3 days of death in 2013–2014, 2015–2016, and 2017–2018, respectively, was investigated. Multivariate logistic regression was applied to evaluate the independent effects of various factors on the risk of receiving aggressive end-of-life care.
Results: Significant trends of increase in receiving palliative care were found. The proportion of patients who died of non-cancer diseases and received palliative care was lower than that of those who died of cancers. Palliative care was associated with a reduced risk of ICU admission within 30 days of death (adjusted odds ratio [AOR]: 0.361), death in ICU (AOR: 0.208), and receiving CPR within 3 days of death (AOR: 0.057). Patients who died of non-cancer diseases had a higher risk of ICU admission within 30 days of death (AOR: 5.016), death in ICU (AOR: 5.086), and receiving CPR within 3 days of death (AOR: 3.274).
Conclusion: Utilization of palliative care is increasing. Patients who died of non-cancer diseases received less palliative care but more aggressive end-of-life care than those who died of cancers.
Background: Being next-of-kin to someone with cancer requiring palliative care involves a complex life situation. Changes in roles and relationships might occur and the next-of-kin thereby try to adapt by being involved in the ill person’s experiences and care even though they can feel unprepared for the care they are expected to provide. Therefore, the aim of this study was to develop a classic grounded theory of next-of-kin in palliative cancer care.
Method: Forty-two next-of-kin to persons with cancer in palliative phase or persons who had died from cancer were interviewed. Theoretical sampling was used during data collection. The data was analysed using classic Grounded Theory methodology to conceptualize patterns of human behaviour.
Results: Constructing stability emerged as the pattern of behaviour through which next-of-kin deal with their main concern; struggling with helplessness. This helplessness includes an involuntary waiting for the inevitable. The waiting causes sadness and frustration, which in turn increases the helplessness. The theory involves; Shielding, Acknowledging the reality, Going all in, Putting up boundaries, Asking for help, and Planning for the inescapable. These strategies can be used separately or simultaneously and they can also overlap each other. There are several conditions that may impact the theory Constructing stability, which strategies are used, and what the outcomes might be. Some conditions that emerged in this theory are time, personal finances, attitudes from extended family and friends and availability of healthcare resources.
Conclusions: The theory shows the complexities of being next-of-kin to someone receiving palliative care, while striving to construct stability. This theory can increase healthcare professionals’ awareness of how next-of-kin struggle with helplessness and thus generates insight into how to support them in this struggle.
Background: The assessment of patients’ quality of life (QOL) is essential when evaluating the outcome of palliative care; however, no instruments have been validated for measuring symptoms and QOL in patients receiving palliative care in Chile. We aimed to investigate the content validity of the EORTC Quality of Life Questionnaire Core 15 Palliative Care (QLQ-C15-PAL), replicating the methods used previously to shorten the EORTC Quality of Life Questionnaire Core 30 (QLQ-C30) for use among patients in palliative care.
Methods: This cross-sectional study was conducted from October to November 2017 in four palliative care services. Patients with advanced cancer and health care professionals (HCPs) were invited to individual interviews to determine the relevance, appropriateness and relative importance of the 30 items of the QLQ-C30 for evaluating the outcome of palliative care, and whether relevant additional issues should be included.
Results: A total of 48 patients and 35 HCPs participated. The most important dimensions selected were pain, physical functioning, sleeping difficulties, emotional functioning, nausea/vomiting, fatigue, social functioning, lack of appetite, role functioning and constipation. Qualitative data identified important additional issues not covered by the questionnaire such as satisfaction with care, emotions and psychological support, as well as linguistic issues in the dyspnea and constipation items.
Conclusions: The EORTC QLQ-C15-PAL showed good content validity in the assessment of symptoms and QOL of advanced cancer patients; therefore, we recommend the use of this questionnaire in palliative care in Chile. Dyspnea and constipation items were revised by the EORTC group. More research is needed to add a social dimension for a comprehensive assessment of patients’ QOL.