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Impact of carcinoid syndrome symptoms and long-term use of somatostatin analogs on quality of life in patients with carcinoid syndrome: A survey study.

ABSTRACT: To evaluate association of carcinoid syndrome (CS) symptom burden and somatostatin analog (SSA) duration with quality of life (QoL) using Functional Assessment of Cancer Therapy-General (FACT-G) and Patient-Reported Outcomes Measurement Information System (PROMIS-29) instruments.Adults who received treatment for CS symptoms in the US were recruited to participate in a cross-sectional online survey (July-October, 2016). Demographic, clinical, and QoL questions (FACT-G, 29 CS-related supplemental questions, PROMIS-29) were included. Descriptive and multivariable regression analyses adjusting for demographic and clinical characteristics followed.Most (98%) of the 117 patients received SSAs in the prior month. Multivariable regression analysis showed ?4 bowel movements/day (vs <4) and each additional CS symptom was associated with 7.1 (P?=?.043) and 3.4 (P?=?.034) point FACT-G total score decreases, respectively. Requiring bed rest (vs normal activity) was associated with significant decreases in FACT-G total score (P?8 years versus <2.7 years.CS symptom burden was observed to be associated with lower QoL scores, measured by FACT-G. Patients with >8 years SSA treatment duration versus <2.7 years had higher QoL.

SUBMITTER: Halperin DM

PROVIDER: S-EPMC6392719 | biostudies-literature | 2018 Nov

REPOSITORIES: biostudies-literature

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Impact of carcinoid syndrome symptoms and long-term use of somatostatin analogs on quality of life in patients with carcinoid syndrome: A survey study.

Halperin Daniel M DM Huynh Lynn L Beaumont Jennifer L JL Cai Beilei B Totev Todor T Bhak Rachel H RH Duh Mei S MS Neary Maureen P MP Cella David D

Medicine 20181101 47

To evaluate association of carcinoid syndrome (CS) symptom burden and somatostatin analog (SSA) duration with quality of life (QoL) using Functional Assessment of Cancer Therapy-General (FACT-G) and Patient-Reported Outcomes Measurement Information System (PROMIS-29) instruments.Adults who received treatment for CS symptoms in the US were recruited to participate in a cross-sectional online survey (July-October, 2016). Demographic, clinical, and QoL questions (FACT-G, 29 CS-related supplemental ...[more]

PMID: 30461659

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Project description:BackgroundThere is limited information on changes over time in carcinoid syndrome (CS) symptoms and quality of life (QoL). This study assessed change in CS symptoms and QoL in patients treated with somatostatin analogs (SSAs) using the Functional Assessment of Cancer Therapy-General (FACT-G) and Patient-Reported Outcomes Measurement Information System (PROMIS)-29 instruments.MethodsPatients ≥18 years old with CS symptoms and treated with SSA or non-SSA agents in the United States were recruited through a patient advocacy group to complete a two-part, anonymous online survey. Time point (T) 1 survey was fielded from July-October 2016, and T2 survey followed 6 months later. Clinical characteristics and SSA treatment duration were assessed at T1. FACT-G and PROMIS-29 QoL surveys were administered and CS symptoms were assessed at T1 and T2; proportions of patients not experiencing symptoms were compared by McNemar's test. Healthcare resource utilization (HRU) was assessed for the T1-T2 interval, and mean difference in QoL score from T1 to T2 by SSA duration was calculated.ResultsOf 117 participants at T1, 89 (76%) completed the T2 survey and served as the study sample; 11 (13%) were treated with SSAs for > 0-2 years, 37 (42%) for > 2-5 years, and 39 (45%) for > 5 years. A higher proportion of patients at T2 vs. T1 reported the following symptoms as not applicable: diarrhea (16% vs. 7%, p < 0.05), flushing (28% vs. 18%, p < 0.05), wheezing (78% vs 66%, p = 0.008). Most patients (89%) had a physical exam and a mean of 7.2 healthcare provider visits between T1 and T2. Patients treated with SSAs for ≤2 years had a mean positive change of 3.7 in their FACT-G total score between surveys, and 6.0 in an additional set of CS-specific questions. Patients receiving SSAs for > 2 years did not appear to associate with a clinically meaningful improvement in QoL score as assessed by FACT-G between T1 and T2; patients also had no clinically meaningful improvement as assessed by PROMIS-29.ConclusionsThere may be clinically important improvement in QoL as measured by FACT-G in patients in earlier years of receiving SSA, which may not appear in later years of SSA treatment.

Project description:BackgroundTo investigate the long-term quality of life (QoL) of children with cerebellar mutism syndrome (CMS) and explore the risk factors for a low QoL.ProcedureThis cross-sectional study investigated children who underwent posterior fossa surgery using an online Pediatric Quality of Life Inventory questionnaire. CMS and non-CMS patients were included to identify QoL predictors.ResultsSixty-nine patients were included (male, 62.3%), 22 of whom had CMS. The mean follow-up time was 45.2 months. Children with CMS had a significantly lower mean QoL score (65.3 vs. 83.7, p < 0.001) and subdomain mean scores (physical; 57.8 vs. 85.3, p < 0.001; social: 69.5 vs. 85.1, p = 0.001; academic: p = 0.001) than those without CMS, except for the emotional domain (78.0 vs. 83.7, p = 0.062). Multivariable analysis revealed that CMS (coefficient = -14.748.61, p = 0.043), chemotherapy (coefficient = -7.629.82, p = 0.013), ventriculoperitoneal (VP) shunt placement (coefficient = -10.14, p = 0.024), and older age at surgery (coefficient = -1.1830, p = 0.007) were independent predictors of low total QoL scores. Physical scores were independently associated with CMS (coefficient = -27.4815.31, p = 0.005), VP shunt placement (coefficient = -12.86, p = 0.025), and radiotherapy (coefficient = -13.62, p = 0.007). Emotional score was negatively associated with age at surgery (coefficient = -1.92, p = 0.0337) and chemotherapy (coefficient = -9.11, p = 0.003). Social scores were negatively associated with male sex (coefficient = -13.68, p = 0.001) and VP shunt placement (coefficient = -1.36, p = 0.005), whereas academic scores were negatively correlated with chemotherapy (coefficient = -17.45, p < 0.001) and age at surgery (coefficient = -1.92, p = 0.002). Extent of resection (coefficient = 13.16, p = 0.021) was a good predictor of higher academic scores.ConclusionCMS results in long-term neurological and neuropsychological deficits, negatively affecting QoL, and warranting early rehabilitation.

Project description:IntroductionThis study aims to assess the quality of life (QoL) in patients who have undergone decompressive craniectomy (DC) for any pathology that has caused life-threatening intracranial hypertension. Similarly, it aims to evaluate QoL perceived by caregivers or external informants. In addition to that, the last purpose is to determine which clinical or therapeutic factors could correlate with a better QoL.MethodsA single-center cross-sectional study was designed. All patients over 18 years old who underwent a supratentorial DC at our department due to intracranial hypertension of any etiology, from January 2015 to December 2021, were retrospectively selected. Patients with incomplete follow-up (under 1 year from the event or those who died) or who declined to participate in the study were excluded. QoL was assessed with SF-36 and CAVIDACE scales. The correlation between clinical and therapeutic variables and SF-36 subscales was studied with Spearman's correlation and the Mann-Whitney U-test.ResultsA total of 55 consecutive patients were recruited: 22 patients had died, three were missed for follow-up, and 15 declined to participate, thus 15 subjects were finally included. The mean follow-up was 47 months (IQR 21.5-67.5). A significant reduction in the "role physical" and "role emotional" subscales of SF-36 was observed compared with the general population. According to caregivers, a significant reduction was assigned to the "physical wellbeing" and "rights" domains. The "physical functioning" score was poorer in women, older patients, those with dominant hemisphere disease, those who required tracheostomy, and those with poor outcomes in the modified Rankin scale. A strong correlation was found between the QoL index at the CAVIDACE scale and the SF-36 subscales "physical functioning" and "role physical".ConclusionMost patients and caregivers reported acceptable QoL after DC due to a life-threatening disease. A significant reduction in SF- 36 subscales scores "role limitation due to physical problems" and "role limitation due to emotional problems" was referred by patients. According to caregivers' QoL perception, only 25% of the survey's participants showed low scores in the QoL index of the CAVIDACE scale. Only 26.7% of the patients showed mood disorders.

Project description:PurposeLittle is known about health-related quality of life (HRQL) in long-term survivors (LTS) of colorectal cancer (CRC).MethodsLong-term CRC survivors (≥5 years) treated in previous National Surgical Adjuvant Breast and Bowel Project trials were recruited from 60 sites. After obtaining consent, a telephone survey was administered, which included HRQL instruments to measure physical health (Instrumental Activities of Daily Living [IADL], SF-12 Physical Component Scale [PCS], SF-36 Vitality Scale), mental health (SF-12 Mental Component Scale [MCS], Life Orientation Test, and Impact of Cancer), and clinical symptoms (Fatigue Symptom Inventory [FSI], European Organization for Research and Treatment of Cancer Colorectal Module [EORTC-CR38], and Brief Pain Inventory). A multivariable model identified predictors of overall quality of life (global health rating).ResultsParticipants (N = 708) had significantly higher HRQL compared with age group-matched non-cancer controls with higher mean scores on SF-12 PCS (49.5 vs. 43.7, p = <0.05), MCS (55.6 vs. 52.1, p = <0.05), and SF-36 Vitality Scale (67.1 vs. 59.9, p = <0.05). Multivariable modeling has demonstrated that better overall physical and mental health (PCS and MCS), positive body image (EORTC-CR38 scale), and less fatigue (FSI), were strongly associated with overall quality of life as measured by the global health rating. Interestingly, ability to perform IADLs, experience of cancer, gastrointestinal complaints, and pain, were not important predictors.ConclusionsIn long-term CRC survivors, overall physical and mental health was excellent compared with general population. Other disease-related symptoms did not detract from good overall health.Implications for cancer survivorsLTS of CRC within the setting of a clinical trial have higher HRQL than the general population, and treatment regimens do not appear to be associated with any significant late effects on quality of life.Trial registrationNSABP LTS-01: NCT00410579.

Dataset Information

Impact of carcinoid syndrome symptoms and long-term use of somatostatin analogs on quality of life in patients with carcinoid syndrome: A survey study.

Publications

Impact of carcinoid syndrome symptoms and long-term use of somatostatin analogs on quality of life in patients with carcinoid syndrome: A survey study.

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