Comparing functional decline and distress from symptoms in people with thoracic life-limiting illnesses: lung cancers and non-malignant end-stage respiratory diseases

BackgroundMalignant and non-malignant respiratory diseases account for >4.6 million deaths annually worldwide. Despite similar symptom burdens, serious inequities in access to palliative care persists for people with non-malignant respiratory diseases.AimTo compare functional decline and symptom distress in advanced malignant and non-malignant lung diseases using consecutive, routinely collected, point-of-care national data.Setting/participantsThe Australian national Palliative Care Outcomes Collaboration collects functional status (Australia-modified Karnofsky Performance Status (AKPS)) and symptom distress (patient-reported 0–10 numerical rating scale) in inpatient and community settings. Five years of data used Joinpoint and weighted scatterplot smoothing.ResultsIn lung cancers (89 904 observations; 18 586 patients) and non-malignant end-stage respiratory diseases (14 827 observations; 4279 patients), age at death was significantly lower in people with lung cancer (73 years; IQR 65–81) than non-malignant end-stage respiratory diseases (81 years; IQR 73–87 years; p<0.001). Four months before death, median AKPS was 40 in lung cancers and 30 in non-malignant end-stage respiratory diseases (p<0.001). Functional decline was similar in the two groups and accelerated in the last month of life. People with non-malignant diseases accessed palliative care later.Pain-related distress was greater with cancer and breathing-related distress with non-malignant disease. Breathing-related distress increased towards death in malignant, but decreased in non-malignant disease. Distress from fatigue and poor sleep were similar for both.ConclusionsIn this large dataset unlike previous datasets, the pattern of functional decline was similar as was overall symptom burden. Timely access to palliative care should be based on needs not diagnoses.

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636 Patient-reported distress with immunotherapy-based first-line treatment for mNSCLC: a real-world evidence study

Journal for ImmunoTherapy of Cancer ◽

10.1136/jitc-2021-sitc2021.636 ◽

2021 ◽

Vol 9 (Suppl 3) ◽

pp. A665-A665

Author(s):

Monica Bodd ◽

Susan Locke ◽

Scott Antonia ◽

Jeffrey Crawford ◽

John Hartman ◽

...

Keyword(s):

Palliative Care ◽

Real World ◽

Symptom Distress ◽

First Line ◽

Treatment Groups ◽

Real World Evidence ◽

Patient Reported ◽

Duke University ◽

Over Time ◽

First Line Treatment

BackgroundThere are limited published real-world data about patient-reported outcomes with immunotherapies (IO) in metastatic non-small cell lung cancer (mNSCLC). We describe the patient experience with first-line IO-based treatments vs. chemotherapy in this setting.MethodsWe conducted a retrospective chart review of adult patients with mNSCLC treated at Duke University from March 2015-June 2020. At each visit, patients self-reported their distress level and sources of distress using the NCCN Distress Thermometer (DT) tool, consisting of an 11-point ordinal scale reporting overall distress and a 39-item Problem List (PL). We abstracted demographic, clinical, distress, response data (by investigator assessment), then analyzed these data using descriptive statistics and generalized estimating equations accounting for clustering of clinic visits within participants and generalized linear models accounting for study exposure time.Results152 patients were analyzed in four groups: single agent immunotherapy (IO alone, n=40), dual immunotherapy (IO+IO, n=27), chemo-immunotherapy (IO+Chemo, n=46), and chemotherapy alone (n=39). Patients were followed for up to 1 year or earliest of: death, last contact, or 2nd line therapy start. Participants' mean age was 65.7 years. In all patients, overall distress was worst before treatment start (figure 1), and the odds of actionable distress (DT score >4) decreased over time by 10% per month (OR=0.901, 95% CI:0.813, 0.998, p=0.045). There were no significant differences in actionable distress across treatment groups. Symptom distress remained high over time, while other sources of distress (practical, family, and emotional) decreased. The most frequent sources of symptom distress were fatigue (90% of patients ever reported, 40% of all DTs), pain (75% of patients, 30% of DTs), and breathing (68% of patients, 22% of DTs) (figure 2). Treatment with chemotherapy alone yielded the fewest tumor responses (50%) and lowest clinical benefit rate (74.4%) compared to any IO therapy. Unplanned healthcare utilization was significantly different across treatment groups; IO+IO resulted in the lowest utilization rate (0.57, 95% CI:0.36, 0.90), while chemotherapy yielded the highest (1.46, 95% CI:1.00,2.12). Palliative care was utilized in 40% of patients; among those with actionable distress at any time (n=113; 74%), 53% (n=60) had a palliative care visit.ConclusionsThis single-center, real-world evidence study demonstrates that patients with mNSCLC experience significant distress prior to starting first-line treatment, with persistent symptom distress over time. Furthermore, IO treatment is associated with reduced healthcare utilization compared to chemotherapy. Increased utilization of integrated palliative care services may improve the patient experience of mNSCLC treatment, especially for management of symptom distress.Ethics ApprovalThis clinical study involves retrospective analyses of data extracted from medical charts and was approved by Duke University School of Medicine Institutional Review Board (IRB#106013).ConsentAs there was no prospective enrollment of subjects, consent was obtained through a Waiver or Alteration of Consent and Authorization and Decedent Research Notification of the Health Insurance Portability and Accountability Act (HIPAA) 1996.Abstract 636 Figure 1Overall distress thermometer scores over timeAbstract 636 Figure 2Most frequently reported problems by treatment type

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Sleeping-related distress in a palliative care population: A national, prospective, consecutive cohort

Palliative Medicine ◽

10.1177/0269216321998558 ◽

2021 ◽

pp. 026921632199855

Author(s):

David C Currow ◽

Walter Davis ◽

Alanna Connolly ◽

Anu Krishnan ◽

Aaron Wong ◽

...

Keyword(s):

Palliative Care ◽

Karnofsky Performance Status ◽

Point Of Care ◽

Performance Status ◽

Symptom Assessment ◽

Direct Care ◽

Mental Wellbeing ◽

Residential Aged Care ◽

Poor Sleep ◽

Patient Reported

Background: Sleep, a multi-dimensional experience, is essential for optimal physical and mental wellbeing. Poor sleep is associated with worse wellbeing but data are scarce from multi-site studies on sleeping-related distress in palliative care populations. Aim: To evaluate patient-reported distress related to sleep and explore key demographic and symptom distress related to pain, breathing or fatigue. Design: Australian national, consecutive cohort study with prospectively collected point-of-care data using symptoms from the Symptom Assessment Scale (SAS). Setting/Participants: People ( n = 118,117; 475,298 phases of care) who died while being seen by specialist palliative care services ( n = 152) 2013–2019. Settings: inpatient (direct care, consultative); community (outpatient clinics, home, residential aged care). Results: Moderate/severe levels of sleeping-related distress were reported in 11.9% of assessments, more frequently by males (12.7% vs 10.9% females); people aged <50 years (16.2% vs 11.5%); and people with cancer (12.3% vs 10.0% for other diagnoses). Sleeping-related distress peaked with mid-range Australia-modified Karnofsky Performance Status scores (40–60). Strong associations existed between pain-, breathing- and fatigue-related distress in people who identified moderate/severe sleeping-related distress, adjusted for age, sex and functional status. Those reporting moderate/severe sleeping-related distress were also more likely to experience severe pain-related distress (adjusted odds ratios [OR] 6.6; 95% confidence interval (CI) 6.3, 6.9); breathing-related distress (OR 6.2; 95% CI 5.8, 6.6); and fatigue-related distress (OR 10.4; 95% CI 9.99–10.8). Conclusions: This large, representative study of palliative care patients shows high prevalence of sleeping-related distress, with strong associations shown to distress from other symptoms including pain, breathlessness and fatigue.

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Symptom-Related Distress among Indigenous Australians in Specialist End-of-Life Care: Findings from the Multi-Jurisdictional Palliative Care Outcomes Collaboration Data

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph17093131 ◽

2020 ◽

Vol 17 (9) ◽

pp. 3131

Author(s):

John A. Woods ◽

Claire E. Johnson ◽

Hanh T. Ngo ◽

Judith M. Katzenellenbogen ◽

Kevin Murray ◽

...

Keyword(s):

Palliative Care ◽

End Of Life ◽

Rating Scale ◽

Symptom Relief ◽

First Episode ◽

Indigenous Australians ◽

Specialist Palliative Care ◽

Community Settings ◽

Patient Reported ◽

Care Outcomes

Symptom relief is fundamental to palliative care. Aboriginal and Torres Strait Islander (Indigenous) Australians are known to experience inequities in health care delivery and outcomes, but large-scale studies of end-of-life symptoms in this population are lacking. We compared symptom-related distress among Indigenous and non-Indigenous Australian patients in specialist palliative care using the multi-jurisdictional Palliative Care Outcomes Collaboration dataset. Based on patient-reported rating scale responses, adjusted relative risks (aRRs) stratified by care setting were calculated for occurrence of (i) symptom-related moderate-to-severe distress and worsening distress during a first episode of care and (ii) symptom-related moderate-to-severe distress at the final pre-death assessment. The p-value significance threshold was corrected for multiple comparisons. First-episode frequencies of symptom-related distress were similar among Indigenous (n = 1180) and non-Indigenous (n = 107,952) patients in both inpatient and community settings. In final pre-death assessments (681 Indigenous and 67,339 non-Indigenous patients), both groups had similar occurrence of moderate-to-severe distress when care was provided in hospital. In community settings, Indigenous compared with non-Indigenous patients had lower pre-death risks of moderate-to-severe distress from overall symptom occurrence (aRR 0.78; p = 0.001; confidence interval [CI] 0.67–0.91). These findings provide reassurance of reasonable equivalence of end-of-life outcomes for Indigenous patients who have been accepted for specialist palliative care.

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A patient-centred interdisciplinary palliative care programme for end-stage chronic respiratory diseases

International Journal of Palliative Nursing ◽

10.12968/ijpn.2010.16.4.47785 ◽

2010 ◽

Vol 16 (4) ◽

pp. 189-194 ◽

Cited By ~ 6

Author(s):

Daisy JA Janssen ◽

Martijn A Spruit ◽

Ton PG Alsemgeest ◽

Joan D Does ◽

Jos MGA Schols ◽

...

Keyword(s):

Palliative Care ◽

Respiratory Diseases ◽

Care Programme ◽

Chronic Respiratory Diseases ◽

Palliative Care Programme ◽

End Stage

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Patient-Reported Outcome of Physical Therapy in Amyotrophic Lateral Sclerosis: Observational Online Study (Preprint)

10.2196/preprints.10099 ◽

2018 ◽

Author(s):

Robert Meyer ◽

Susanne Spittel ◽

Laura Steinfurth ◽

Andreas Funke ◽

Dagmar Kettemann ◽

...

Keyword(s):

Amyotrophic Lateral Sclerosis ◽

Physical Therapy ◽

Rating Scale ◽

Multidisciplinary Treatment ◽

Functional Decline ◽

Significant Loss ◽

Management Platform ◽

Patient Reported ◽

Prospective Longitudinal ◽

Lateral Sclerosis

BACKGROUND Physical therapy is an essential component of multidisciplinary treatment in amyotrophic lateral sclerosis (ALS). However, the meaning of physical therapy beside preservation of muscular strength and functional maintenance is not fully understood. OBJECTIVE The purpose of this study was to examine patients’ perception of physical therapy during symptom progression using an internet assessment approach. METHODS A prospective, longitudinal, observational study was performed. Recruitment took place in an ALS center in Berlin, Germany. Online self-assessment was established on a case management platform over 6 months. Participants self-assessed the progression of the disease with the ALS Functional Rating Scale-Revised (ALSFRS-R) and tracked the efficacy of targeted physical therapy using Measure Yourself Medical Outcome Profile (MYMOP). We used the net promoter score (NPS) to inquire into recommendation levels of physical therapy. RESULTS Forty-five participants with ALS were included in the study. Twenty-seven (60.0%) started the online assessment. The mean duration of physical therapy sessions per week was 142.7 minutes (SD 60.4) with a mean frequency of 2.9 (SD 1.2) per week. As defined by MYMOP input, the most concerning symptoms were reported in the legs (62.2%), arms (31.1%), and less frequently in the torso (6.7%). As expected for a progressive disease, there was a functional decline of 3 points in the ALSFRS-R at the end of the observation period (n=20). Furthermore, the MYMOP showed a significant loss of 0.8 in the composite score, 0.9 in the activity score and 0.8 in the targeted symptom. In spite of functional decline, the recommendation for physical therapy jumped from a baseline value of 20 NPS points to a very high 50 points at the end of study (P=.05). CONCLUSIONS Physical therapy is perceived as an important treatment method by patients with ALS. Despite functional deterioration, patients are satisfied with physical therapy and recommend this intervention. The results also underline how the meaning of physical therapy changes throughout the disease. Physical therapy in ALS has to be regarded as a supportive and palliative health care intervention beyond functional outcome parameters.

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Patient Reported Outcome Measures of Sleep Quality in Fibromyalgia: A COSMIN Systematic Review

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph17092992 ◽

2020 ◽

Vol 17 (9) ◽

pp. 2992

Author(s):

Carolina Climent-Sanz ◽

Anna Marco-Mitjavila ◽

Roland Pastells-Peiró ◽

Fran Valenzuela-Pascual ◽

Joan Blanco-Blanco ◽

...

Keyword(s):

Sleep Quality ◽

Psychometric Properties ◽

Outcome Measures ◽

Rating Scale ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Sleep Diary ◽

Poor Sleep ◽

Patient Reported

Poor sleep quality is a common concern and a troublesome symptom among patients suffering from fibromyalgia. The purpose of this review was to identify and describe the available patient reported outcome measures (PROMs) of sleep quality validated in adult people diagnosed with fibromyalgia. The COSMIN and PRISMA recommendations were followed. An electronic systematized search in the electronic databases PubMed, Scopus, CINAHL Plus, PsycINFO, and ISI Web of Science was carried out. Validation studies of PROMs of sleep quality in fibromyalgia published in English or Spanish were included. The selection of the studies was developed through a peer review process through the online software “COVIDENCE”. The quality of the studies was assessed using the COSMIN Risk of Bias checklist. A total of 5 PROMs were found validated in patients with fibromyalgia: (1) Pittsburgh Sleep Quality Index (PSQI), (2) Jenkins Sleep Scale (JSS), (3) Sleep Quality Numeric Rating Scale (SQ-NRS), (4) Medical Outcomes Study-Sleep Scale (MOS-SS), and (5) Fibromyalgia Sleep Diary (FSD). The quality of the evidence was very good and the quality of the results ranged from moderate to high. All the included PROMs, except for the FSD, showed adequate psychometric properties and, therefore, are valid and reliable tools for assessing sleep quality in the context of FM. However, none of the studies analyzed all the psychometric properties of the included PROMs as established in the COSMIN guidelines, highlighting that this is a potential field of research for future investigations.

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Health professionals’ perceptions of palliative care for end-stage cardiac and respiratory conditions: a qualitative interview study

BMC Palliative Care ◽

10.1186/s12904-021-00805-3 ◽

2021 ◽

Vol 20 (1) ◽

Author(s):

Hannah J. Fairlamb ◽

Fliss E. M. Murtagh

Keyword(s):

Palliative Care ◽

Health Professionals ◽

Respiratory Diseases ◽

Care Planning ◽

Specialist Palliative Care ◽

Care Services ◽

Palliative Care Services ◽

Advance Care ◽

The Uk ◽

End Stage

Abstract Background End-stage cardiac and respiratory diseases are common in the UK. People with these end-stage conditions experience similar, or even worse, symptomatic suffering to cancer patients but are less likely to receive specialist palliative care services. The objective of this study is to explore health professional perceptions and current practices in relation to specialist palliative care for patients with end-stage cardiac and respiratory disease. Methods Qualitative study using in-depth interviews with health professionals, audio recorded and transcribed verbatim for thematic analysis. The study was conducted with doctors and nurses from cardiology, respiratory, and palliative care specialities in the UK. The participants had to be involved clinically in providing care to people with end-stage cardiac or respiratory diseases. Results A total of 16 health professionals participated (5 cardiology, 5 respiratory, and 6 palliative care). Participants reported variable disease trajectories in these diseases making deciding on timing of palliative care involvement difficult. This was complicated by lack of advance care planning discussions, attributed to poor communication, and lack of health professional time and confidence. Participants reported poor interdepartmental education and limited specialist palliative care involvement in multidisciplinary teams. Conclusions Palliative care for end-stage cardiac and respiratory diseases needs more attention in research and practice. Better integration of advance care planning discussions and early patient education/professional awareness are needed to enable timely referral to palliative care. Moreover, increased interdepartmental working for health professionals via joint educational and clinical meetings is perceived as likely to support earlier and increased referral to specialist palliative care services.

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Proposed Criteria for Constipation in Palliative Care Patients. A Multicenter Cohort Study

Journal of Clinical Medicine ◽

10.3390/jcm10010040 ◽

2020 ◽

Vol 10 (1) ◽

pp. 40

Author(s):

Tomasz Dzierżanowski ◽

Philip Larkin

Keyword(s):

Palliative Care ◽

Diagnostic Algorithm ◽

Pooled Analysis ◽

Self Report ◽

Multicenter Cohort Study ◽

Patient Reported ◽

Bowel Movements ◽

Definition Of ◽

End Stage ◽

Unconscious Patients

Although constipation is one of the most frequently reported symptoms in palliative care, there is no widely accepted definition of constipation and none suitable for patients unable to self-report or express symptoms. This study aimed to verify the objective and subjective symptoms of constipation to develop a diagnostic algorithm for constipation, which is also feasible in unconscious patients. In a pooled analysis of two observational studies, 369 out of 547 adult end-stage cancer patients met the inclusion criteria. The patient-reported difficulty of defecation correlated with observable measures, such as days since last bowel movement, and frequency of bowel movements. Difficulty became at least moderate when there were no bowel movements for ≥2 days, or the frequency of bowel movements was ≤3 per week. The diagnostic algorithm, comprising these three symptoms offers a simple, rapid, and comprehensive tool for palliative care, independent of the patient’s state of consciousness. A clinical trial is necessary to confirm its validity and usefulness.

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Effects of preoperative obesity and psychiatric comorbidities on minimum clinically important differences for lumbar fusion in grade 1 degenerative spondylolisthesis: analysis from the prospective Quality Outcomes Database registry

Journal of Neurosurgery Spine ◽

10.3171/2020.4.spine20296 ◽

2020 ◽

Vol 33 (5) ◽

pp. 635-642

Author(s):

Joseph Laratta ◽

Leah Y. Carreon ◽

Avery L. Buchholz ◽

Andrew Y. Yew ◽

Erica F. Bisson ◽

...

Keyword(s):

Spinal Fusion ◽

Preoperative Diagnosis ◽

Rating Scale ◽

Lumbar Fusion ◽

Degenerative Spondylolisthesis ◽

Leg Pain ◽

Quality Outcomes ◽

Medical Comorbidities ◽

Fusion Procedure ◽

Patient Reported

OBJECTIVEMedical comorbidities, particularly preoperatively diagnosed anxiety, depression, and obesity, may influence how patients perceive and measure clinical benefit after a surgical intervention. The current study was performed to define and compare the minimum clinically important difference (MCID) thresholds in patients with and without preoperative diagnoses of anxiety or depression and obesity who underwent spinal fusion for grade 1 degenerative spondylolisthesis.METHODSThe Quality Outcomes Database (QOD) was queried for patients who underwent lumbar fusion for grade 1 degenerative spondylolisthesis during the period from January 2014 to August 2017. Collected patient-reported outcomes (PROs) included the Oswestry Disability Index (ODI), health status (EQ-5D), and numeric rating scale (NRS) scores for back pain (NRS-BP) and leg pain (NRS-LP). Both anchor-based and distribution-based methods for MCID calculation were employed.RESULTSOf 462 patients included in the prospective registry who underwent a decompression and fusion procedure, 356 patients (77.1%) had complete baseline and 12-month PRO data and were included in the study. The MCID values for ODI scores did not significantly differ in patients with and those without a preoperative diagnosis of obesity (20.58 and 20.69, respectively). In addition, the MCID values for ODI scores did not differ in patients with and without a preoperative diagnosis of anxiety or depression (24.72 and 22.56, respectively). Similarly, the threshold MCID values for NRS-BP, NRS-LP, and EQ-5D scores were not statistically different between all groups. Based on both anchor-based and distribution-based methods for determination of MCID thresholds, there were no statistically significant differences between all cohorts.CONCLUSIONSMCID thresholds were similar for ODI, EQ-5D, NRS-BP, and NRS-LP in patients with and without preoperative diagnoses of anxiety or depression and obesity undergoing spinal fusion for grade 1 degenerative spondylolisthesis. Preoperative clinical and shared decision-making may be improved by understanding that preoperative medical comorbidities may not affect the way patients experience and assess important clinical changes postoperatively.

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Association of time to surgery with leg pain after lumbar discectomy: is delayed surgery detrimental?

Journal of Neurosurgery Spine ◽

10.3171/2019.8.spine19613 ◽

2020 ◽

Vol 32 (2) ◽

pp. 160-167 ◽

Cited By ~ 2

Author(s):

Alessandro Siccoli ◽

Victor E. Staartjes ◽

Marlies P. de Wispelaere ◽

Marc L. Schröder

Keyword(s):

Rating Scale ◽

Proportional Hazards Model ◽

Cox Proportional Hazards ◽

Lumbar Discectomy ◽

Cox Proportional Hazards Model ◽

Neurological Deficits ◽

Leg Pain ◽

Specific Method ◽

Time To Surgery ◽

Patient Reported

OBJECTIVEWhile it has been established that lumbar discectomy should only be performed after a certain waiting period unless neurological deficits are present, little is known about the association of late surgery with outcome. Using data from a prospective registry, the authors aimed to quantify the association of time to surgery (TTS) with leg pain outcome after lumbar discectomy and to identify a maximum TTS cutoff anchored to the minimum clinically important difference (MCID).METHODSTTS was defined as the time from the onset of leg pain caused by radiculopathy to the time of surgery in weeks. MCID was defined as a minimum 30% reduction in the numeric rating scale score for leg pain from baseline to 12 months. A Cox proportional hazards model was utilized to quantify the association of TTS with MCID. Maximum TTS cutoffs were derived both quantitatively, anchored to the area under the curve (AUC), and qualitatively, based on cutoff-specific MCID rates.RESULTSFrom a prospective registry, 372 patients who had undergone first-time tubular microdiscectomy were identified; 308 of these patients (83%) obtained an MCID. Attaining an MCID was associated with a shorter TTS (HR 0.718, 95% CI 0.546–0.945, p = 0.018). Effect size was preserved after adjustment for potential confounders. The optimal maximum TTS was estimated at 23.5 weeks based on the AUC, while the cutoff-specific method suggested 24 weeks. Discectomy after this cutoff starts to yield MCID rates under 80%. The 24-week cutoff also coincided with the time point after which the specificity for MCID first drops below 50% and after which the negative predictive value for nonattainment of MCID first surpasses ≥ 20%.CONCLUSIONSThe study findings suggest that late lumbar discectomy is linked with poorer patient-reported outcomes and that—in accordance with the literature—a maximum TTS of 6 months should be aimed for.

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