scholarly journals Sleep Disturbance in Cancer Patients Referred to an Ambulatory Integrative Oncology Consultation

2021 ◽  
Author(s):  
Santhosshi Narayanan ◽  
Akhila Reddy ◽  
Gabriel Lopez ◽  
Wenli Liu ◽  
Sara Ali ◽  
...  
Keyword(s):  
Sleep Disturbance ◽  
Eligible Patient ◽  
Hot Flashes ◽  
Well Being ◽  
Published Data ◽  
Poor Sleep ◽  
Integrative Oncology ◽  
Factors Associated ◽  
Patient Reported ◽  
Edmonton Symptom Assessment Scale

Abstract Background Sleep disturbance (SD) is highly prevalent in oncology and negatively affects quality of life and mortality. Evidence supports the use of integrative oncology (IO) practices to treat SD, but there is limited published data on the characteristics of SD and factors associated with SD in IO. We determined the prevalence, severity, and factors associated with SD. Methods Patients with cancer referred for initial outpatient IO consultation in 2017 were eligible. Patient demographics, clinical characteristics, and patient-reported outcomes [Edmonton Symptom Assessment Scale, (ESAS), Measure Yourself Concerns and Wellbeing (MYCaW), PROMIS-10] were retrospectively reviewed. Results 1520 patients were included in the analysis. The majority (70%) were women with breast cancer (42%). 971 (64%) patients reported significant SD with ESAS Sleep ≥ 4, yet only 11% expressed poor sleep as their primary or secondary concern for the IO consultation. The median SD (IQR) was 5 (3,7). ESAS scores for fatigue (adjusted OR 1.16; CI 1.07–1.26, p < 0.001), pain (adjusted OR 1.07; CI 1.00-1.15, p < 0.05), hot flashes (adjusted OR 1.14; CI 1.07–1.22, p < 0.001), well-being (adjusted OR 1.33; CI 1.22–1.46, p < 0.001), and psychological distress score (anxiety and depression) (adjusted OR 1.16; CI 1.01–1.11, P < 0.01) were independently associated with SD in multivariate analysis. Acupuncture was the most frequent intervention prescribed 175 (35%). Other modalities included oncology massage (15%), health psychology (5%) and meditation (1%). Conclusions Although 64% of patients seeking IO consultation reported clinically significant SD, only 11% were seeking integrative approaches for managing SD. ESAS fatigue, hot flashes, well-being, and psychological symptoms were significantly associated with SD.

Factors associated with patient-reported subjective well-being among advanced lung or non-colonic gastrointestinal cancer patients

2017 ◽  
Vol 16 (1) ◽  
pp. 23-31 ◽  
Author(s):  
Sriram Yennurajalingam ◽  
Yu Jung Kim ◽  
Yi Zhang ◽  
Jichan Park ◽  
Joseph Arthur ◽  
...  
Keyword(s):  
Palliative Care ◽  
Cancer Patients ◽  
Gastrointestinal Cancer ◽  
Family Caregiver ◽  
Well Being ◽  
Advanced Lung Cancer ◽  
Caregiver Distress ◽  
Factors Associated ◽  
Patient Reported ◽  
Edmonton Symptom Assessment Scale

ABSTRACTObjective:The aim of this study was to determine the factors associated with a feeling of well-being using the Edmonton Symptom Assessment Scale (ESAS)–Feeling of Well-Being item (ESAS–FWB; where 0 = best and 10 = worst) among advanced lung or non-colonic gastrointestinal cancer patients who were referred to an outpatient palliative care clinic (OPCC). We also examined the association of performance on the ESAS–FWB with overall survival (OS).Method:We reviewed the records of consecutive patients with incurable advanced lung cancer and non-colonic gastrointestinal cancer presenting to an OPCC from 1 January 2008 through to 31 December 2013. Descriptive statistics were employed to summarize patient characteristics. Multivariate regression analysis was used to determine the factors associated with ESAS–FWB severity. We also examined the association of ESAS–FWB scores and survival using Kaplan–Meier survival analysis.Results:A total of 826 evaluable patients were analyzed (median age = 62 years, 57% male). Median ESAS–FWB scores were five times the interquartile range (5 × IQR; 3–7). ESAS–FWB score was found to be significantly associated with ESAS fatigue (OR = 2.31, p < 0.001); anxiety (OR = 1.98, p < 0.001); anorexia (OR = 2.31, p < 0.001); cut down, annoyed, guilty, eye opener (CAGE) score (hazard ratio [HR] = 1.80, p = 0.008); and family caregiver distress (HR = 1.93, p = 0.002). A worse ESAS–FWB score was significantly associated with decreased OS (r = –0.18, p < 0.001). However, ESAS–FWB score was not independently associated with OS in the final multivariate model (p = 0.35), which included known major clinical prognostic factors.Conclusions:Worse ESAS–FWB scores were significantly associated with high scores on ESAS fatigue, anorexia, anxiety, CAGE, and family caregiver distress. More research is necessary to understand how palliative care interventions are capable of improving the contributory factors related to ESAS–FWB score.

Outpatient acupuncture effects on patient self-reported symptoms in oncology care: A retrospective analysis of real-world data.

2018 ◽  
Vol 36 (34_suppl) ◽  
pp. 135-135
Author(s):  
Gabriel Lopez ◽  
M. Kay Garcia ◽  
Wenli Liu ◽  
Michael Spano ◽  
Susan Underwood ◽  
...  
Keyword(s):  
Initial Treatment ◽  
Hot Flashes ◽  
Well Being ◽  
Comprehensive Cancer Center ◽  
Cancer Center ◽  
Poor Sleep ◽  
Real World Data ◽  
Edmonton Symptom Assessment Scale ◽  
Clinically Significant

135 Background: Increased access to complementary therapies such as acupuncture at academic medical centers has created new opportunities for management of cancer and cancer treatment related symptoms. Methods: Patients presenting for acupuncture treatment during calendar year 2016 at an outpatient integrative medicine clinic in a comprehensive cancer center were asked to complete a modified Edmonton Symptom Assessment Scale (ESAS; 16 symptoms, score 0-10, 10 worst possible) before and after each visit. ESAS subscales analyzed included global (GDS; score 0-90), physical (PHS, 0-60), and psychological distress (PSS, 0-20). ESAS symptom score change pre/post treatment and from baseline visit to first follow up were evaluated by paired t-test. Results: Of 375 participants [mean age 55.6, 68.3% female, 73.9% white, most common cancer diagnosis of breast (32.8%) and thoracic/head&neck (25.9%)], 73.3% had at least one follow-up treatment [mean 4.6 (SD 5.1) treatments]. Highest/worst symptoms at baseline were poor sleep (3.92), fatigue (3.43), well-being (3.31), and pain (3.29). Statistically significant reduction/improvement (pre/post) was observed for all ESAS symptoms and subscales for the initial treatment (p <0.001). Hot flashes had the highest mean reduction (-1.93), followed by fatigue (-1.72), numbness/tingling (-1.70), and nausea (-1.67). Clinically significant reductions were also observed for ESAS subscales of GDS (-12.2), PHS (-8.5), and PSS (-2.6). For symptom change from initial treatment to first follow-up (pre/pre), statistically and clinically significant improvement was observed for spiritual pain (-1.10; p<0.001) and ESAS subscale of GDS (-6.09; p=0.048). Clinical response rates (reduction ≥1) on follow-up were highest for symptoms of spiritual pain (58.9%), dry mouth (57.8%) and nausea (57.3%). Conclusions: Outpatient acupuncture was associated with immediate and longitudinal significant improvement across a range of symptoms commonly experienced by individuals during cancer care. Further research is needed to better understand frequency of treatments needed in clinical practice to help maintain benefit.

Sleep Disturbance in Psoriatic Disease: Prevalence and Associated Factors

2017 ◽  
Vol 44 (9) ◽  
pp. 1369-1374 ◽  
Author(s):  
Ian T.Y. Wong ◽  
Vinod Chandran ◽  
Suzanne Li ◽  
Dafna D. Gladman
Keyword(s):  
Psoriatic Arthritis ◽  
Sleep Quality ◽  
Sleep Disturbance ◽  
Quality Index ◽  
Short Form ◽  
Life Quality ◽  
Poor Sleep ◽  
Poor Sleep Quality ◽  
Psoriatic Disease ◽  
Patient Reported

Objective.We aimed to determine the prevalence and quality of sleep in patients with psoriatic arthritis (PsA) and those with psoriasis without PsA (PsC) followed in the same center, to identify factors associated with sleep disturbance, and to compare findings to those of healthy controls (HC).Methods.The study included 113 PsA [ClASsification for Psoriatic ARthritis (CASPAR) criteria] and 62 PsC (PsA excluded by a rheumatologist) patients and 52 HC. Clinical variables were collected using a standard protocol. The sleep quality was evaluated using the Pittsburgh Sleep Quality Index (PSQI). Other patient-reported outcomes collected included the Health Assessment Questionnaire (HAQ), Dermatology Life Quality Index, EQ-5D, Medical Outcomes Study Short Form-36 survey, patient’s global assessment, and the Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-fatigue) scale. Statistical analyses included descriptive statistics, Wilcoxon rank-sum test, and linear regression.Results.The prevalence of poor sleep quality was 84%, 69%, and 50% in PsA, PsC, and HC, respectively. Total PSQI score was higher in both patients with PsA and patients with PsC compared with HC (p < 0.01) and higher in patients with PsA compared to patients with PsC (p < 0.0001). EQ-5D anxiety component, EQ-5D final, and FACIT-fatigue were independently associated with worse PSQI in patients with PsC and those with PsA (p < 0.05). Actively inflamed (tender or swollen) joints are independently associated with worse PSQI in patients with PsA (p < 0.01).Conclusion.Patients with psoriatic disease have poor sleep quality. Poor sleep is associated with fatigue, anxiety, and lower EQ-5D. In patients with PsA, poor sleep is associated with active joint inflammation.

scholarly journals Determinants of psychological well-being in axial spondyloarthritis: an analysis based on linked claims and patient-reported survey data

2018 ◽  
Vol 77 (7) ◽  
pp. 1017-1024 ◽  
Author(s):  
Imke Redeker ◽  
Falk Hoffmann ◽  
Johanna Callhoff ◽  
Hildrun Haibel ◽  
Joachim Sieper ◽  
...  
Keyword(s):  
Socioeconomic Status ◽  
Depressive Symptoms ◽  
Axial Spondyloarthritis ◽  
Well Being ◽  
Lifestyle Factors ◽  
Postal Questionnaire ◽  
Health Insurance Data ◽  
Psychological Well Being ◽  
Factors Associated ◽  
Patient Reported

ObjectivesThe aim of this study was to assess the psychological well-being and to analyse factors associated with depressive symptoms in axial spondyloarthritis (axSpA).MethodsA stratified random sample of subjects with a diagnosis of axSpA (International Classification of Diseases, Tenth Revision, German Modification M45) was drawn from health insurance data in Germany. These persons received a postal questionnaire on disease-related, psychological and lifestyle factors as well as socioeconomic status. Additional information to verify the axSpA diagnosis was also collected. The psychological well-being was assessed by means of the 5-item WHO Well-Being Index (WHO-5), which is considered a screening tool for depression. The following established cut-offs on the WHO-5 were applied: >50: good well-being, no depressive symptoms; 29–50: mild depressive symptoms; ≤28: moderate-to-severe depressive symptoms. Information on comorbidities, drug prescriptions and non-pharmacological treatment was retrieved from claims data and linked to the questionnaire data.ResultsA total of 1736 persons with a confirmed axSpA diagnosis were included. Using the cut-offs on the WHO-5, 533 persons (31%) were found to have moderate-to-severe depressive symptoms, 479 (28%) had mild depressive symptoms and 724 (42%) had a good well-being. Multivariable logistic regression revealed that higher disease activity, higher level of functional impairment, lower income, self-reported stress and lack of exercise, and younger age represent factors associated with moderate-to-severe depressive symptoms.ConclusionsThe prevalence of depressive symptoms in axSpA subjects is high and associated with disease-related parameters, socioeconomic status and lifestyle factors. These findings highlight the need for the careful evaluation of depressive symptoms as a part of the management strategy for axSpA.

Determining priority symptoms of women with recurrent ovarian cancers: A Gynecologic Oncology Group study.

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 101-101 ◽  
Author(s):  
Heidi AS Donovan ◽  
Lari B. Wenzel ◽  
Sandra Ward ◽  
Susan M. Sereika ◽  
Robert P. Edwards ◽  
...  
Keyword(s):  
Peripheral Neuropathy ◽  
Sleep Disturbance ◽  
Symptom Severity ◽  
Gynecologic Oncology ◽  
Well Being ◽  
Recurrent Ovarian Cancer ◽  
Gynecologic Oncology Group ◽  
Peritoneal Cancer ◽  
Ovarian Cancers ◽  
Patient Reported

101 Background: The purpose of this study is to recommend a core set of priority symptoms to be assessed in research and clinical settings for women with recurrent ovarian cancers. Methods: We used baseline data of 497 women with recurrent ovarian, fallopian, or primary peritoneal cancer participating in a symptom management randomized clinical trial (GOG-0259) to identify a core index of patient-reported priority symptoms. We used the Symptom Representation Questionnaire to assess priority rankings of 28 symptoms based on four criteria: (1) symptom prevalence, (2) patient-reported symptom severity, (3) percentage of women identifying each symptom as one of top three symptoms “I would like to get better control over”, and (4) the association between symptom severity and functional wellbeing as measured by the Functional Assessment of Cancer Therapy - Ovarian. Final priority ranking included all symptoms that were ranked in the top 10 for any of the four criteria. Results: Of the original 28 symptoms, 19 were ranked in the top 10 for at least one criterion: fatigue, sleep disturbance, pain, anxiety, peripheral neuropathy, constipation, abdominal bloating, drowsiness, mood swings, memory problems, weight gain, nausea, sexual concerns, vomiting, hair loss, lymphedema, lack of appetite, shortness of breath, and depression. Fatigue, sleep disturbance, and pain were each ranked one of the top 10 symptoms for all four criteria. Anxiety, peripheral neuropathy, and constipation were each ranked in the top 10 for three of the 4 criteria. Conclusions: We propose a core index of 19 patient-reported symptoms to be systematically assessed among patients with recurrent ovarian cancer. These symptoms are common, severe, poorly managed, and/or interfere with survivors’ functioning and can be efficiently assessed in 1-2 minutes. Systematic assessment in clinical and research settings could advance understanding about the predictors and consequences of poorly managed symptoms and could lead to more proactive, personalized interventions to improve functional well-being in this at-risk patient population.

scholarly journals Improvement in Patient-Reported Sleep in Type 2 Diabetes and Prediabetes Participants Receiving a Continuous Care Intervention with Nutritional Ketosis

2018 ◽  
Author(s):  
Morgan J. Siegmann ◽  
Shaminie J Athinarayanan ◽  
Sarah J Hallberg ◽  
Amy L. McKenzie ◽  
Nasir H. Bhanpuri ◽  
...  
Keyword(s):  
Type 2 Diabetes ◽  
Sleep Quality ◽  
Sleep Disturbance ◽  
Dietary Intervention ◽  
Poor Sleep ◽  
Continuous Care ◽  
Care Intervention ◽  
Patient Reported ◽  
One Year

AbstractObjectiveSleep disruption is frequently associated with type 2 diabetes (T2D) and hyperglycemia. We recently reported the effectiveness of a continuous care intervention (CCI) emphasizing nutritional ketosis for improving HbA1c, body weight and cardiovascular risk factors in T2D patients. The present study assessed the effect of this CCI approach on sleep quality using a subjective patient-reported sleep questionnaire.MethodsA non-randomized, controlled longitudinal study; 262 T2D and 116 prediabetes patientsenrolled in the CCI and 87 separately recruited T2D patients continued usual care (UC) treatment. Patients completed the Pittsburgh Sleep Quality Index (PSQI) questionnaire. A PSQI score of >5 (scale 0 to 21) was used to identify poor sleepers.ResultsGlobal sleep quality improved in the CCI T2D (p<0.001) and prediabetes (p<0.001) patients after one year of intervention. Subjective sleep quality (component 1), sleep disturbance (component 5) and daytime dysfunction (component 7), also showed improvements in the CCI T2D (p<0.01 for sleep quality and sleep disturbance; and p<0.001 for daytime dysfunction) and prediabetes patients (p<0.001 for all three components); compared to the UC T2D group after one year. The proportion of patients with poor sleep quality was significantly reduced after one year of CCI (T2D; from 68.3% at baseline to 56.5% at one year, p=0.001 and prediabetes; from 77.9% at baseline to 48.7% at one year, p<0.001).ConclusionThis study demonstrates improved sleep quality as assessed by PSQI in patients with T2D and prediabetes undergoing CCI including nutritional ketosis but not in T2D patients receiving UC. The dietary intervention benefited both sleep quality and the severity of T2D symptoms suggesting that nutritional ketosis improves overall health via multiple mechanisms.

scholarly journals Burden of disease and adaptation to life in patients with Crohn’s perianal fistula: a qualitative exploration

2020 ◽  
Vol 18 (1) ◽  
Author(s):  
Samuel O. Adegbola ◽  
Lesley Dibley ◽  
Kapil Sahnan ◽  
Tiffany Wade ◽  
Azmina Verjee ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Perianal Fistula ◽  
Well Being ◽  
Definitive Treatment ◽  
Emotional Impact ◽  
Published Data ◽  
Perianal Fistulas ◽  
Patient Reported ◽  
The Impact

Abstract Background Perianal fistulas are a challenging manifestation of Crohn’s disease. Best medical and surgical therapy results in only about a third of patients remaining in remission at one year on maintenance treatment and sustained healing is often elusive. There is little published data on patient perspective of living with the condition or coping strategies in the face of non-curative/non-definitive treatment. We aimed to understand the experience of living with perianal fistula(s) and their impact on quality of life and routine functioning. Methods This exploratory qualitative study used purposive sampling to recruit participants with current / previous diagnosis of Crohn’s anal fistulas, from national IBD / bowel disease charities. The “standards for reporting qualitative research” (SRQR) recommendations were followed. Unstructured individual face-to-face interviews were audio recorded, transcribed and analysed thematically. Early themes were reviewed by the study team including patient advocates, clinicians and qualitative researchers. Results Twelve interviews were conducted, achieving apparent data saturation. Three broad themes were uncovered: Burden of symptoms; Burden of treatment; and Impact on emotional, physical and social well-being. Each included several sub-themes, with considerable interplay between these. The impact of perianal fistula(s) on patients with CD is intense and wide reaching, negatively affecting intimate, close and social relationships. Fistulas cause losses in life and work-related opportunities, and treatments can be difficult to tolerate. Conclusion Crohn’s perianal fistulas exert a heavy negative physical and emotional impact on patients. These findings will inform development of a patient reported outcome measure to assess treatment effectiveness and quality of life for patients living with this challenging condition.

Association between feeling of well-being and overall survival in advanced lung or non-colonic gastrointestinal patients receiving palliative care.

2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 199-199
Author(s):  
Sriram Yennu ◽  
Yu Jung Kim ◽  
Yi Zhang ◽  
Ji Chan Park ◽  
David Hui ◽  
...  
Keyword(s):  
Palliative Care ◽  
Overall Survival ◽  
Advanced Cancer ◽  
Independent Predictor ◽  
Well Being ◽  
Assessment System ◽  
Advanced Lung Cancer ◽  
Factors Associated ◽  
Patient Reported ◽  
Family Distress

199 Background: The aim of this study was to determine the association between feeling of well-being (FWB, 0= best, 10= worst) and overall survival in advanced lung or non-colonic gastrointestinal patients who were referred to an outpatient palliative care clinic (OPC). We also determined the predictors of severity of moderate or severe - feeling of well-being in advanced lung or non-colonic gastrointestinal patients presenting to palliative care. Methods: We reviewed the records of consecutive patients with incurable advanced lung cancer and non-colonic gastrointestinal cancer presenting to OPC. Edmonton Symptom Assessment System (ESAS) scores were obtained at the initial visit between from Jan. 1, 2008-Dec. 31, 2013. Descriptive statistics were used to summarize patient characteristics. Clinically significant FWB was defined as ≥4/10. Overall Survival (OS) was calculated from the time of diagnosis of advanced cancer to death or last contact. Univariate analyses were performed and only significant variables were included in multivariate regression analysis to determine factors associated with severity OF FWB. Results: A total of 826 evaluable patients were analyzed (median age, 62 years; 57% male). Median ESAS FWB scores was 5 IQR (3-7). Worse FWB was significantly associated with OS (months) 6.33 (5.03, 8) vs 4.2 (3.37, 4.67) P=0.0003, from the time of diagnosis of advanced cancer. The final model of the Backwards Stepwise regression of factors associated with OS found that FWB (HR 1.09, p=0.3) was not an independent predictor of OS. ESAS FWB was significantly associated with ESAS fatigue (OR 2.31, p<0.001); anxiety (OR 1.98, p<0.001); anorexia (OR 2.31, p<0.001); CAGE positivity [alcoholism] (HR 1.80, p=0.008); and family distress (HR 1.93, p=0.002). Conclusions: Worse ESAS FWB showed univariate association with OS but it does not appear to be an independent predictor of OS when controlling for other known predictors. ESAS FWB was significantly associated with fatigue, anxiety, anorexia, CAGE positivity, and family distress, suggests that ESAS FWB may be a multidimensional screening measure for patient reported health related quality of life.

Capturing the patient voice in radiotherapy trials: An analysis of trends and future directions of patient-reported outcomes.

2017 ◽  
Vol 35 (5_suppl) ◽  
pp. 216-216
Author(s):  
Noelle L. Williams ◽  
Ayesha Ali ◽  
Tu Dan ◽  
Kyle Ziemer ◽  
Benjamin E. Leiby ◽  
...  
Keyword(s):  
Digital Literacy ◽  
Patient Reported Outcomes ◽  
Cost Of Care ◽  
Phase Iii ◽  
Published Data ◽  
Cooperative Groups ◽  
Factors Associated ◽  
Patient Reported ◽  
Chi Squared

216 Background: The importance of patient-reported outcomes (PROs) has been recognized and this data is increasingly being incorporated into modern radiotherapy (RT) trial design. Despite this, there is a lack of published data regarding collection and reporting of PRO data in the RT setting. We sought to systematically evaluate RT protocols to assess trends of PRO data collection and factors associated with reporting. Methods: We queried multi-institutional RT trials indexed on ClinicalTrials.gov, the Cochrane database, and MEDLINE and identified trials with full protocols available. We collected information in regards to study population, primary and secondary endpoints, quality of life measures, and PRO data. Descriptive and chi-squared analyses were employed to investigate trends and factors associated with PRO reporting. Results: 232 protocols were evaluable (1971-2014) from multiple cooperative groups. Of these, 198 were completed and 34 were in progress. Overall, only 41% of trials had protocol-specified collection of PROs. Of the 155 trials that had at least 1 published report, only 34 (22%) reported PRO data. All nine trials with PRO as a primary endpoint (9/9) had published reports with this information. Treatment era was associated with PRO collection, with 30% of trials collecting PRO data prior to 2005, 48% between 2006 and 2010, and 66% between 2011 and 2015 ( X2 [4, N = 232] = 15.79, p = 0.003). PROs were most likely to be collected in phase III trials ( X2 [4, N = 226] = 59.6, p < 0.0001). Conclusions: PROs are historically under collected and reported in cooperative group RT trials. Despite increasing PRO collection in modern trials, reporting remains suboptimal and may inaccurately inform survivorship issues. As digital literacy progresses, electronic PRO data may offer a potential avenue for improvement. Ultimately, PRO data will serve as a vital component to help define value in newly proposed payment models focused on improving quality of care while reducing cost of care.

scholarly journals Development and validation of a patient-reported measure of compassion in healthcare: the Sinclair Compassion Questionnaire (SCQ)

BMJ Open ◽  
2021 ◽  
Vol 11 (6) ◽  
pp. e045988
Author(s):  
Shane Sinclair ◽  
Thomas F Hack ◽  
Cara C MacInnis ◽  
Priya Jaggi ◽  
Harrison Boss ◽  
...  
Keyword(s):  
Factor Analysis ◽  
Acute Care ◽  
Phase 1 ◽  
Intraclass Correlation ◽  
Well Being ◽  
Phase 2 ◽  
Internal Reliability ◽  
Term Care ◽  
Patient Reported ◽  
Edmonton Symptom Assessment Scale

ObjectivesCompassion is a key indicator of quality care that is reportedly eroding from patients’ care experience. While the need to assess compassion is recognised, valid and reliable measures are lacking. This study developed and validated a clinically informed, psychometrically rigorous, patient-reported compassion measure.DesignData were collected from participants living with life-limiting illnesses over two study phases across four care settings (acute care, hospice, long term care (LTC) and homecare). In phase 1, data were analysed through exploratory factor analysis (EFA), with the final items analysed via confirmatory factor analysis (CFA) in phase 2. The Schwartz Center Compassionate Care Scale (SCCCS), the revised Edmonton Symptom Assessment Scale (ESAS-r) and Picker Patient Experience Questionnaire (PPEQ) were also administered in phase 2 to assess convergent and divergent validity.Setting and participants633 participants were recruited over two study phases. In the EFA phase, a 54-item version of the measure was administered to 303 participants, with 330 participants being administered the final 15-item measure in the CFA phase.ResultsBoth EFA and CFA confirmed compassion as a single factor construct with factor loadings for the 15-item measure ranging from 0.76 to 0.86, with excellent test–retest reliability (intraclass correlation coefficient range: 0.74–0.89) and excellent internal reliability (Cronbach’s alpha of 0.96). The measure was positively correlated with the SCCCS (r=0.75, p<0.001) and PPEQ (r=0.60, p<0.001). Participants reporting higher experiences of compassion had significantly greater well-being and lower depression on the ESAS-r. Patients in acute care and hospice reported significantly greater experiences of compassion than LTC residents.ConclusionsThere is strong initial psychometric evidence for the Sinclair Compassion Questionnaire (SCQ) as a valid and reliable patient-reported compassion measure. The SCQ provides healthcare providers, settings and administrators the means to routinely measure patients experiences of compassion, while providing researchers a robust measure to conduct high-quality research.

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