Patient, provider, and nurse preferences regarding patient-reported outcomes (PRO) and side effect management during cancer treatment of minority, rural and economically disadvantaged patients.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e18652-e18652
Author(s):  
Bernard Tawfik ◽  
Karen Quezada ◽  
Ellen Burgess ◽  
Mikaela Kosich ◽  
Shoshana Adler Jaffe ◽  
...  

e18652 Background: Side effects from treatment significantly impact quality of life and patients ability to continue cancer therapy. Patient Reported Outcomes (PRO) tools have been shown to significantly improve multiple key cancer endpoints including overall survival. However, preferences for PRO tool components, such as contact modality, is not well studied in minority, rural and low-income patient populations. As the only National Cancer Institute (NCI) Designated Cancer Center within a 500-mile radius, we care for the urban/rural, multiethnic communities we serve with tremendous cancer health and socioeconomic disparities. This study evaluated patient, provider and nurse perspectives with the goal of optimizing PRO tools for our unique population. Methods: A survey was developed to assess preferred PRO contact modality. Additional survey domains included side effect burden, quality of life, financial hardship and nutritional services accessed. The survey was offered to all patients receiving IV chemotherapy in the center infusion suite from June to August 2020 using the REDCap platform. Providers and nurses (P/N) were surveyed via email. Survey responses were analyzed using SAS 9.4 and compared via chi-square test where appropriate. Results: Ninety patient surveys were collected; 51.1% were minorities (44.4% Hispanic), 35.6% were rural and 40.0% had income < $30,000. All patients had access to a communication device but 12% did not have access to a cell phone of any kind. Device access included 68% smart phone, 20% cell phone, 22% landline, 53% computer, 39% tablet. Patients preferred a response to reported side effects within 0-3 hours (73%) while only 29% of 55 P/N surveyed shared this expectation (p < 0.0001). Almost half (48%) of patients felt side effect management was a moderate or significant issue with 58% experiencing nausea and/or vomiting, 41% diarrhea, 34% weight change, 33% pain, and 22% mucositis. While 72% of patients experienced nutritional related side effects and 95% of P/N preferred to answer nutritional issues by referring to a dietitian, only 9% of patients reported being referred. The majority of patients reported side effect quality of life implications (60.3%) or missed work / were unemployed (82%). Conclusions: In a minority, rural and low-income patient population, 88% of patients had access to a cell phone communication device, with smart phone access in the majority. Patients and P/N reported significantly different expectations regarding side effect management. Our data suggests an underutilization of nutritional referrals by P/N, despite a recognition of value. This study informs the implementation of a PRO tool to address side effects and develop nutritionist referral strategies in minority, rural and low-income patient populations.

2019 ◽  
Vol 37 (4_suppl) ◽  
pp. 429-429
Author(s):  
Amy Westermann ◽  
Lynn McCormick Matrisian ◽  
Lola Rahib

429 Background: Pancreatic cancer (PC) and its treatment(s) results in symptom and side effect burden and can impact patient’s overall quality of life (QOL). Methods: Patient reported information on management of side effects and symptoms were collected using PanCAN’s Patient Registry (01/2016 – 07/2018). Results: Patient reported information on side effects, pain and depression is detailed in the table. Side effects: 94% reported fatigue and 8% reported taking anti-fatigue medication. 72% reported nausea or vomiting during treatment and 83% reported taking anti-nausea medication. Pain: Of the 90% of patients who reported pain related to PC, 27% did not take pain medication, 47% visited the ER and 32% were hospitalized due to pain. Depression: Of the 83% of users reported feeling depressed during PC, 46% were diagnosed with depression, 37% prescribed anti-depressant, and 48% did not see a therapist. Conclusions: Nausea was reported as most managed. Fatigue, pain and depression were generally unmanaged. ER visits and hospitalizations due to pain were frequently reported. An improvement in the management of these side effects and symptoms is needed as it can affect patient’s ability to tolerate treatment, improve overall QOL, and may lower overall healthcare costs. [Table: see text]


2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 1566-1566
Author(s):  
Paris A. Kosmidis ◽  
Christie Lagogianni ◽  
Thanos Kosmidis

1566 Background: Quality of life of cancer patients is a critical part of cancer care. Symptom management is evolving as a multidisciplinary approach, and is increasingly delivered through a combination of physical and remote interactions. CareAcross is an online platform offering personalized, guidelines-based support to cancer patients, that complements physicians’ support and enables remote monitoring. This analysis investigated the improvement in the quality of life of cancer patients delivered through such remote support. Methods: Patients engage with an online interactive platform to receive personalized support based on a variety of parameters, through algorithms incorporating their exact diagnoses, treatments and comorbidities, and more. For symptom management, patients report the presence of specific side-effects via brief questionnaires; for each side-effect reported, they receive tailored support (text and multimedia) to help overcome it. These online questionnaires are repeated periodically to capture the outcome of the supportive process, and provide additional support as necessary. A retrospective analysis evaluated the efficacy of the personalized support: each patient’s reported side-effects were compared before versus after receiving the support, hence calculating the reduced incidence. Results: 2203 patients from 8 countries, with breast, lung, prostate or colorectal cancer (1563, 404, 159 and 77, respectively) reported side-effects, received support, and updated their reports at least once. The median follow-up period was 4.9 months. The patient-reported outcomes on their quality of life revealed substantial improvement, regardless of cancer type (lowest recorded improvement = 25.7%). Commonly reported side-effects included sleep problems, dry mouth, constipation, changes in food taste, and more (see Table). Side-effects reported in specific cancer types also showed substantial improvement, including hot flushes (breast; 32.0% improvement), dyspnea (lung; 38.1%), bowel dysfunction (prostate; 80%) and others. The efficacy of the support to breast, prostate or colorectal cancer patients was similar; support to lung cancer patients exhibited the lowest efficacy (p < 0.05). Fatigue was the most common side-effect. It was also the most resistant to improvement compared to all others (p < 0.05). Conclusions: Digital remote support of cancer patients is a realistic option to improve quality of life. Randomized controlled trials can help quantify its impact on health economics, hospital admissions, resource utilization, and other aspects.[Table: see text]


2021 ◽  
pp. 019459982110137
Author(s):  
Catherine T. Haring ◽  
Janice L. Farlow ◽  
Marie Leginza ◽  
Kaitlin Vance ◽  
Anna Blakely ◽  
...  

Objective Surgical procedures that render patients acutely aphonic can cause them to experience significant anxiety and distress. We queried patient perceptions after tracheostomy or laryngectomy and investigated whether introducing augmentative technology was associated with improvement in patient-reported outcomes. Methods Participants included hospitalized patients who acutely lost the ability to speak due to tracheostomy or total laryngectomy from April 2018 to December 2019. We distributed questions regarding the patient communication experience and relevant questions from the validated V-RQOL questionnaire (Voice-Related Quality of Life). Patients were offered a tablet with the electronic communication application Verbally. Pre- and postintervention groups were compared with chi-square analyses. Results Surveys were completed by 35 patients (n = 18, preintervention; n = 17, postintervention). Prior to using augmentative technology, 89% of patients who were aphonic reported difficulty communicating, specifically noting breathing or suctioning (56%), treatment and discharge plans (78%), or immediate needs, such as pain and using the bathroom (39%). Communication difficulties caused anxiety (55%), depression (44%), or frustration (62%), and 92% of patients were interested in using an electronic communication device. Patients reported less trouble communicating after the intervention versus before (53% vs 89%, P = .03), including less difficulty communicating about treatment or discharge plans (35% vs 78%, P < .01). V-RQOL scores were unchanged. Discussion Acute loss of phonation arising from surgery can be highly distressing for patients, and use of augmentative technology may alleviate some of these challenges by improving communication. Further studies are needed to identify what additional strategies may improve overall well-being. Implications for Practice Electronic communication devices may benefit patients with acute aphonia.


2021 ◽  
Vol 19 ◽  
Author(s):  
Enes Akyüz ◽  
Mohd. Farooq Shaikh ◽  
Betül Köklü ◽  
Cansu Ozenen ◽  
Alina Arulsamy

: Over the decades, various interventions have been developed and utilized to treat epilepsy. However, majority of epileptic patients are often first prescribed with anti-epileptic drugs (AED), now known as anti-seizure drugs (ASD), as a first line of defense to suppress their seizures and regain their quality of life. ASDs exert their anti-convulsant effects through various mechanisms of action including regulation of ion channels, blocking of glutamate-mediated stimulating neurotransmitter interaction, and enhancing the inhibitory GABA transmission. About one third of epileptic patients are often resistant to anti-convulsant drugs, while others develop numerous side effects which may lead to treatment discontinuation and further deterioration of quality of life. Common side effects of ASDs include headache, nausea and dizziness. However, more adverse effects such as auditory and visual problems, skin problems, liver dysfunction, pancreatitis and kidney disorders may also be witnessed. Some ASDs may even result in life-threatening conditions as well as serious abnormalities, especially in patients with comorbidities and in pregnant women. Nevertheless, some clinicians had observed a reduction in the development of side effects post individualized ASD treatment. This suggest that a careful and well-informed ASD recommendation to patients may be crucial for an effective and side-effect free control of their seizures. Therefore, this review aimed to elucidate the anticonvulsant effects of ASDs as well as their side effect profile, by discussing their mechanism of action and reported adverse effects based on clinical and preclinical studies, thereby providing clinicians with a greater understanding of the safety of current ASDs.


2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e24080-e24080
Author(s):  
Eva Battaglini ◽  
David Goldstein ◽  
Susanna Park

e24080 Background: Chemotherapy-induced peripheral neuropathy (CIPN) is a major yet poorly understood side effect of cancer treatment, leading to symptoms including numbness, tingling and pain. It can lead to cessation of effective treatment, long-term functional disability and reduced quality of life. Despite this, there is currently little understanding of its impact. Methods: The aim of the study was to investigate the impact of neurotoxic chemotherapy side effects on the lives of cancer survivors. Data was collected via an online survey covering demographics, cancer diagnosis and treatment, CIPN and other side effects of chemotherapy, using standardised measures to assess comorbidities, quality of life, physical activity, pain and CIPN symptoms. Results: Data was analysed from 986 respondents who were treated with neurotoxic therapies (83% female, 16% male), with mean age 59 years ( SD 10.7 years). A majority of respondents were treated for breast cancer (59%), 14% for colorectal cancer and 11% for multiple myeloma. Chemotherapy types received included paclitaxel (32%), docetaxel (32%) and oxaliplatin (13%), and respondents completed treatment a mean of 3.6 years ago. The majority of respondents (80%) reported experiencing neuropathic symptoms after finishing chemotherapy, with 77% reporting current CIPN. Those with CIPN reported functional impacts, with 23% reporting moderate to severe problems with hand function and 28% reporting moderate to severe walking difficulties. CIPN was second most commonly rated as the treatment side effect having the greatest impact, following fatigue. Respondents with high levels of current CIPN symptoms had poorer quality of life, more comorbid health conditions, higher BMI and more often received multiple neurotoxic chemotherapies than those with low levels of CIPN symptoms. In addition, respondents who reported meeting government physical activity guidelines had lower CIPN and higher quality of life scores than those who did not meet the guidelines. Regression analyses investigating the association between quality of life and clinical and sociodemographic characteristics resulted in a model with comorbid health conditions, CIPN symptoms, years since treatment, age and physical activity as significant predictors of quality of life. Conclusions: These findings suggest that CIPN has a lasting impact on cancer survivors, leading to decreases in quality of life, often occurring alongside poorer general health. This impact supports the need for further research to improve assessment, prevention and treatment.


2016 ◽  
Vol 9 ◽  
pp. CMENT.S40219 ◽  
Author(s):  
Maria K. Peltola ◽  
Joel S. Lehikoinen ◽  
Lauri T. Sippola ◽  
Kauko Saarilahti ◽  
Antti A. Mäkitie

Introduction The patient's role in toxicity reporting is increasingly acknowledged. There is also a need for developing modern communication methods between the patient and the medical personnel. Furthermore, the increasing number of head and neck cancer (HNC) patients is reflected in the volume of treatment follow-up visits, which remains a challenge for the health care. Electronic patient-reported outcome (ePRO) measures may provide a cost-efficient way to organize follow-up for cancer patients. Materials and Methods We tested a novel ePRO application called Kaiku®, which enables real-time, online collection of patient-reported outcomes, such as side effects caused by treatment and quality of life. We conducted a pilot study to assess the suitability of Kaiku® for HNC patients at the Department of Oncology, Helsinki University Hospital, Helsinki, Finland. Patients used Kaiku® during and one month after radiotherapy to report treatment-related side effects and quality of life. Two physicians and a nurse performed the practical electronic communication part of the study. Results Five of the nine patients agreed to participate in the study: three of them had local early-stage larynx cancer (T2N0, T1aN0, and T2N0) and the remaining two patients had early-stage base of tongue cancer (T2N0 and T1N2b). The degree of side effects reported by the patients via Kaiku® ranged from mild to life threatening. The number of outcome data points on patients' progress was significantly increased, which resulted in a better follow-up and improved communication between the patient and the care team. Conclusions Kaiku® seems to be a suitable tool to monitor side effects and quality of life during and after radiotherapy among HNC patients. Kaiku® and similar tools could be useful in organizing a cost-effective follow-up process for HNC patients. We recommend conducting a larger study to further assess the impact of an ePRO solution in routine clinical practice. • ePRO solutions may aid in the follow-up for cancer patients. • They seem suitable to monitor, for example, side effects and quality of life. • These systems ensure fast patient-driven reporting.


2021 ◽  
Vol 39 (28_suppl) ◽  
pp. 53-53
Author(s):  
Akhil Mehta ◽  
Jukes P. Namm ◽  
Ellen D'Errico ◽  
Eric Lau ◽  
Linda Hong ◽  
...  

53 Background: Financial toxicity (FT) is a critical concern for cancer survivors. There is limited data about the relationship between FT throughout the continuum of cancer care, demographics, disease factors, and quality of life (QoL) indicators in gynecologic cancer survivors. Methods: Gynecologic cancer survivors who received treatment from 2015 to 2019 at Loma Linda University Cancer Center were invited to complete an anonymous online survey. A modified version of the comprehensive score for financial toxicity (COST) survey was used to assess FT at baseline and after treatment. The patient-reported outcomes measurement information system (PROMIS) survey was used to assess QoL. Demographic data were summarized using descriptive statistics. Associations between disease factors and FT measured at baseline and after treatment were analyzed using univariable linear regression. Lower COST score coefficients indicate greater FT. Correlations between FT and QoL were evaluated using the Pearson correlation. Results: A total of 252 surveys were sent to gynecologic cancer survivors who met study criteria, of whom 28% responded. Amongst 70 patients included in this analysis, the median age was 64 (IQR 56, 70), 47% were white (n = 33), 20% were unemployed, 22% had a high school or lower level of education, and 50% had an annual income < $60,000. With respect to cancer subtype, 63% had uterine cancer (n = 44), 20% had cervical cancer (n = 14), and 17% had ovarian cancer (n = 12). The mean COST score at baseline and after treatment was 21.2 ± 9.2 and 12.9 ± 7.8, respectively. The following characteristics were associated with significantly greater FT at baseline: Hispanic ethnicity (-5.5; 95% CI: -1 to -10), Black race (-14.4; 95% CI: -3.4 to -25.4), household number > 4 (-6.9; 95% CI: -2.6 to -16.4), Medicare insurance (-6.5; 95% CI: -1.7 to -11.2), and Medicaid insurance (-11.2; 95% CI: -4.3 to -17.9) (p < 0.05). Patients who received combined modality surgery, chemotherapy, and radiation had significantly higher FT (-5.6; 95% CI: -1.3 to -9.8, p < 0.05) compared to those who received single-modality treatment. Likewise, patients with 5 or more treatment-related side effects had significantly higher FT (-6.3; 95% CI -1.13 to -11.4, p < 0.05) compared to those who reported no side effects. During treatment, 24% of patients turned down or skipped treatment, 38% quit their job, and 28% reported family members quit their job. Finally, COST scores measured after treatment correlated positively with physical and mental health (Pearson coefficient 0.57 and 0.56 respectively, p < 0.001). Conclusions: These findings support the need for assessing FT at baseline and throughout the continuum of cancer care to provide individualized assistance to patients facing financial strain. FT affects compliance to treatment which can adversely affect cancer-related outcomes and QoL. Additional policies are needed to address the increasing cost of cancer care.


2019 ◽  
Vol 1 (2) ◽  
pp. 40
Author(s):  
Shanti Lesmana Sari ◽  
Rani Lisa Indra ◽  
Raja Fitriana Lestari

Chemotherapy treatments undergone by breast cancer patient’s have several side effect. From the side effects that, each patient perceives the side effects that will interfere with their daily lives which in turn affect the quality of life. This research was made for showing the correlation of chemotherapy side effect with the quality of life of breast cancer patient’s in Arifin Achmad Hospital in Riau Province. The research was one of quantitative correlation research with cross-section method that had been done to 63 respondents in Arifin Achmad Hospital in Riau Province by using consecutive sampling technique bye used was questionnaire. The test used unpaired t-test. This research result was gotten if Pvalue=0.216 (Pvalue=0.05), which mean is no correlation between chemotherapy side effect perspective and quality of life of breast cancer patient’s. Based on the result, we hope Arifin Achmad Hospital in Riau Province develop more health service to the community to increase positive judgement from chemotherapy treatment and quality of life of breast cancer patient’s.  


Author(s):  
Virendra Singh Hada ◽  
Harish Bhakuni ◽  
Radhika.S.Pukale

Anaplastic astrocytoma (AA) is a diffusely infiltrating malignant, astrocytic, primary brain tumour with a peak incidence between 40 to 50 years of age is a leading cause of cancer death. Though cancer chemotherapy is highly effective in many cancers, but side-effects of chemotherapy are severe in many patients like myelosuppression, anorexia, weight loss, mucositis, fatigue, nausea, vomiting and diarrhoea. It appears that side effects of chemotherapy are manifestations of aggravated Tridosha as Raktadushti (vitiated blood). Therefore, present case study was undertaken to find effectiveness of Ayurvedic medication as an adjuvant or co-therapy in the management of oligoastrocytoma as well as in minimizing the side effect of chemo-radiotherapy. A female patient of age 40 years with brain cancer (clinically diagnosed case of anaplastic oligoastrocytoma grade 3rd) undergoing oral chemotherapy by irnocam 150 mg, avastin 400mg for 6 cycle and radiotherapy was taken. Patient was given classical Ayurvedic formulation of Rasa sindur 50mg+ Abhrakbhasma 250mg+ Vachachurna 500mg+ Panchamritalauha guggulu 250mg BD with honey, Shatavarighrita 5gm BD with milk, Jyotishmatitaila 5 drops BD with Bataasha and cap SNEC30 (liquid curcumin capsules). After the completion of 6th cycle there were very encouraging results observed with negligible side effects, improvement in all chief complaints, general health condition and quality of life of the patient. Ayurvedic medication appears to have significant effect on reducing side effect of chemo-radiotherapy and improving quality of life in the patient of brain cancer (oligoastrocytoma).


Blood ◽  
2021 ◽  
Vol 138 (Supplement 1) ◽  
pp. 4072-4072
Author(s):  
Joel Livingston ◽  
Melanie Jackson ◽  
Ziyad Alrajihi ◽  
Catherine McGuire ◽  
Robert J Klaassen ◽  
...  

Abstract Introduction: The treatment of Immune Thrombocytopenia (ITP) in children has advanced significantly over the last decade with novel therapies and enhanced clinical care guidelines. Recent American Society of Hematology guidelines now recommend the use of thrombopoietin receptor agonist (TPO-RA) medications as the preferred second line therapy for children with ITP. Accompanying this change, recent ASH guidelines also put emphasis on quality of life in managing ITP, acknowledging the detrimental affect ITP and previous managements can have on patient's and family's quality of life. With this change in guidelines, evaluating the impact of these medications on patient reported outcomes outside of clinical trials is important to evaluate the efficacy of therapy. While there is data from adult studies to show that TPO-RAs improve patient's health related quality of life (HRQoL), results were not statistically significant in previous clinical trials in children. Thus, the goal of the present study is to address this gap and describe the real-world experience of using TPO-RAs in pediatric ITP including the impact on patient-reported HRQoL. Methods: We reviewed all children aged 1-18 at our institution with a diagnosis of ITP and started on a TPO-RA medication after March 1, 2017 (date of TPO-RA for pediatric ITP licensure in Canada). A chart review was conducted to collect demographic data (e.g., age, associated diagnoses, previous therapies), TPO-RA data (e.g. dose(s), monitoring, side effects), outcome data (e.g., platelet count, need for emergency treatments). To explore the impact of TPO-RA use on patient-reported HRQoL, semi-structured interviews were conducted by phone with patients over age 7 and/or their guardians with topics including the effects of the TPO-RA on patient symptoms (e.g. bleeding, bruising, need for emergency treatment), activities (e.g. sports, hobbies, social events) mood (e.g. anxiety, stress, fatigue) and financial burden of treatment (e.g. coverage for medication). These interviews were conducted data in parallel to reviewing the Kids ITP Tool (KIT) questionnaire and a qualitative analysis of HRQoL was performed. Results: We identified 25 patients on a TPO-RA medication for pediatric ITP, of these, 3 were on romiplostim, 20 were on eltrombopag and 2 had been on both romiplostim and eltrombopag at different times. The median age at start of TPO-RA was 9 years (range 1 - 16 years). 14/25 responded to TPO-RA medication by meeting platelet count criteria. The average number of treatments per patient in the 6 months prior to commencing a TPO-RA was 3.7 and in the 6 months post commencing a TPO-RA was 0.5. No significant side effects observed with TPO-RA use, although 2 patients had a transient rise in liver enzymes. Of the 25 patients on a TPO-RA, 23 were eligible to participate in the semi-structured interviews (1 family having permanently relocated out of country and was not contactable; one family had a significant language barrier). With interviews ongoing, 11/23 patients and/or families have participated and results to date indicate that the majority (&gt;90%) have seen an improvement in quality of life. All participants interviewed at the time of abstract submission reported improvement in bleeding/bruising symptoms. The majority also noted a reduction in the frequency of emergency treatments and hematology clinic visits. Several participants reported on their ability to resume sports/activities once on a TPO-RA. While there was some reduction in parental stress/worry there was no clear benefit to patient fatigue/mood. Financial concerns about medication costs and duration of therapy were raised, and many parents expressed the cost of medication and source of ongoing funding a significant stressor. There were also concerns related to oral administration for younger children. Discussion: To our knowledge, this is the first post-licensing study to look at the impact of TPO-RA medications on patient-reported HRQoL in children with ITP. At our institution, TPO-RA medications prescribed for pediatric ITP have had a positive impact on patient platelet count and resulted in a reduced need for emergency treatment with minimal noted side effects. There also appears to be a positive impact on patient reported HRQoL reported by the majority of patients and/or families, while issues with medication administration, cost and long-term duration of therapy remain a concern. Disclosures Klaassen: Agios Pharmaceuticals: Consultancy; Amgen: Membership on an entity's Board of Directors or advisory committees; Hoffman-La Roche: Consultancy; Novo Nordisk: Consultancy; Octapharma AG: Consultancy; Sanofi: Consultancy; Takeda: Consultancy.


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