Quality-of-Life Measurement in Advanced Cancer: Assessing the Individual

1999 ◽  
Vol 17 (11) ◽  
pp. 3603-3611 ◽  
Author(s):  
Dympna Waldron ◽  
Ciaran A. O'Boyle ◽  
Michael Kearney ◽  
Michael Moriarty ◽  
Desmond Carney

PURPOSE: Despite the increasing importance of assessing quality of life (QoL) in patients with advanced cancer, relatively little is known about individual patient's perceptions of the issues contributing to their QoL. The Schedule for the Evaluation of Individual Quality of Life (SEIQoL) and the shorter SEIQoL–Direct Weighting (SEIQoL-DW) assess individualized QoL using a semistructured interview technique. Here we report findings from the first administration of the SEIQoL and SEIQoL-DW to patients with advanced incurable cancer. PATIENTS AND METHODS: QoL was assessed on a single occasion using the SEIQoL and SEIQoL-DW in 80 patients with advanced incurable cancer. RESULTS: All patients were able to complete the SEIQoL-DW, and 78% completed the SEIQoL. Of a possible score of 100, the median QoL global score was as follows: SEIQoL, 61 (range, 24 to 94); SEIQoL-DW, 60.5 (range, 6 to 95). Psychometric data for SEIQoL indicated very high levels of internal consistency (median r = .90) and internal validity (median R2 = 0.88). Patients' judgments of their QoL were unique to the individual. Family concerns were almost universally rated as more important than health, the difference being significant when measured using the SEIQoL-DW (P = .002). CONCLUSION: Patients with advanced incurable cancer were very good judges of their QoL, and many patients rated their QoL as good. Judgments were highly individual, with very high levels of consistency and validity. The primacy given to health in many QoL questionnaires may be questioned in this population. The implications of these findings are discussed with regard to clinical assessment and advance directives.

2021 ◽  
Vol 7 (4) ◽  
pp. 469-473
Author(s):  
Ting Fang ◽  
Nian Wang ◽  
Meng Chen ◽  
Hongmei Ma

Objective Explore the impact of personalized nursing services and hospice care on the quality of life of elderly patients with advanced cancer. Method We selected 80 elderly cancer patients admitted to our hospital from September 2020 to May 2021, and divided these patients into a study group and a control group using a random number table method. The patients in the control group used conventional nursing methods to treat and care for the patients, and the patients in the study group used hospice care measures and combined personalized nursing measures. The quality of life and pain treatment effects of the two groups of patients before and after treatment were compared. Result Before treatment, the quality-of-life scores of the two groups of patients were low, and there was no statistical difference (P>0.05); After treatment, the quality of life of the two groups of patients improved, but compared with the control group, the improvement was more obvious in the study group, and the difference was statistically significant (P<0.05). In terms of pain treatment effect, the total effective rate of pain treatment in the study group was 87.5%, which was significantly better than the 62.5% in the control group. The difference was statistically significant (P<0.05). Conclusion Personalized nursing services and hospice care are conducive to improving the survival and treatment of elderly patients with advanced cancer, and can be used as a clinical application program for the care of advanced cancer patients.


2001 ◽  
Vol 9 (5) ◽  
pp. 361-365 ◽  
Author(s):  
Sinead Donnelly ◽  
Lisa Rybicki ◽  
Declan Walsh

2021 ◽  
Vol 7 (5) ◽  
pp. 3320-3324
Author(s):  
Ting Fang ◽  
Nian Wang ◽  
Meng Chen ◽  
Hongmei Ma

Objective Explore the impact of personalized nursing services and hospice care on the quality of life of elderly patients with advanced cancer. Method We selected 80 elderly cancer patients admitted to our hospital from September 2020 to May 2021, and divided these patients into a study group and a control group using a random number table method. The patients in the control group used conventional nursing methods to treat and care for the patients, and the patients in the study group used hospice care measures and combined personalized nursing measures. The quality of life and pain treatment effects of the two groups of patients before and after treatment were compared. Result Before treatment, the quality-of-life scores of the two groups of patients were low, and there was no statistical difference (P>0.05); After treatment, the quality of life of the two groups of patients improved, but compared with the control group, the improvement was more obvious in the study group, and the difference was statistically significant (P<0.05). In terms of pain treatment effect, the total effective rate of pain treatment in the study group was 87.5%, which was significantly better than the 62.5% in the control group. The difference was statistically significant (P<0.05). Conclusion Personalized nursing services and hospice care are conducive to improving the survival and treatment of elderly patients with advanced cancer, and can be used as a clinical application program for the care of advanced cancer patients.


2017 ◽  
Vol 32 (1) ◽  
pp. 287-293
Author(s):  
Nishi Patel ◽  
Melanie Huddart ◽  
Helen Makins ◽  
Theresa Mitchell ◽  
Jane L Gibbins ◽  
...  

Background: Intrathecal drug delivery is known to reduce pain in patients where conventional systemic analgesia has been ineffective or intolerable. However, there is little information regarding the effects of intrathecal drug delivery on quality of life and function in those with advanced, incurable cancer. Aim: Retrospective exploration of the views of bereaved carers regarding the physical and psychosocial effects of external tunnelled intrathecal drug delivery in patients with advanced incurable cancer. Design: Thematic analysis of qualitative interviews with carers of deceased individuals who received percutaneous external tunnelled intrathecal drug delivery as part of their pain management, within two UK centres. Setting: A total of 11 carers were recruited from two UK Palliative Care centres. Family carers of adult patients who had received external tunnelled intrathecal drug delivery analgesia for cancer pain and had died between 6 and 48 months prior to contact were included. Carer relatives who were considered likely to be too vulnerable or who had lodged a complaint about treatment within the recruiting department or who had been treated directly by the interviewer were excluded. Results: In total, 11 interviews took place. The emerging themes were (1) making the decision to have the intrathecal – relatives described desperate situations with severe pain and/or sedation, meaning that the individual would try anything; (2) timing and knowing they were having the best – an increased access to pain and palliative care services, meant carers felt everything possible was being done, making the situation more bearable; (3) was it worth it? – the success of the external tunnelled intrathecal drug delivery was judged on its ability to enable the individual to be themselves through their final illness. Side effects were often considered acceptable, if the external tunnelled intrathecal drug delivery enabled improvements in quality of life. Conclusion: Carers perceived external tunnelled intrathecal drug delivery as most valuable when it improved quality of life towards the end of life, by reducing pain and side effects of conventional systemic analgesia to enable individuals ‘to be themselves’. Under these circumstances, the carers judged significant side effects to be acceptable.


2018 ◽  
Vol 29 (2) ◽  
pp. 97-107
Author(s):  
Daniel A. Hopgood ◽  
Richard J. Czosek ◽  
Tamilyn Bakas ◽  
Nicole Garritano ◽  
Gordon L. Gillespie

We aimed to compare salient characteristics and antecedents of quality of life (QOL) in adolescents and young adults with implantable cardioverter–defibrillators (ICDs) from qualitative methods with quantitative measurement of QOL and correlations between QOL (PedsQL) and measured participant characteristics. Concurrent parallel mixed methods design was used to collect survey data from the PedsQL electronic health record, demographic questionnaire, and semistructured interview data. A convenience sample of 16 individuals with ICDs, aged 13 to 25 years, was obtained from a tertiary pediatric facility. Overall QOL and subdomains of physical, psychosocial, and academic/work were examined by PedsQL and visual analog scale. Select demographics were collected to develop a participant profile. Females with ICDs appear to be at risk of poor QOL given some unknown factors. Financial status of the individual and the family was positively related to QOL. For new ICD persons involved in physical activities that must be stopped, peer support appears to improve QOL.


2019 ◽  
Vol 37 (15_suppl) ◽  
pp. 11613-11613
Author(s):  
Boone W. Goodgame ◽  
Farya Phillips ◽  
Wenhui Vivian Zhang ◽  
Barbara L. Jones

11613 Background: Multiple studies show that patients with advanced cancer often believe the goal of treatment is cure. Our interprofessional team designed the Communicating Oncologic Prognosis with Empathy (COPE) guide to enhance communication for patients, families, and the healthcare team. This unique, single-page tool allows treating physicians to estimate prognosis for patients, including likelihood of living 6 mo, 1y, 2y, and 5y, with or without treatment. Methods: Patients with incurable cancer were enrolled at one oncology clinic. Using a pre/post-test design, participants completed the validated prognosis and treatment perception survey (PTPQ) then met with their oncologist. The COPE guide was used for the discussion and the patient received a copy of the completed COPE. The COPE guide was placed in the patient chart and the healthcare team (social work, spiritual care etc.) used it to provide patient support and explore the patient’s response to the information. Post-test was completed 4-8 weeks later. Qualitative exit interviews were used to assess patient reported impact on communication with medical team, caregivers and family, and quality of life. Results: 43 patients were enrolled and 25 completed all study measures. All patients had advanced cancer with 96% of patients (24) extremely unlikely to be cured ( < 1% chance). Oncologist’s treatment goals were better quality of life and longer life. All participants completing the study found the communication guide helpful, scoring 9-10 out of 10. 95% of patients enrolled wanted to hear details about their prognosis. Pre-intervention, 28% (7) of patients reported their primary goal of treatment as cure (n = 7; 28%) or to extend life as long as possible (n = 7; 28%). Pre-intervention, patient’s perceptions of their oncologist’s goals of treatment were cure (n = 11; 44%) or extend life (n = 8; 32%). At post-test, 8% of participants (2) inaccurately reported goal of treatment as cure (p < 0.05). Conclusions: These findings highlight major gaps in patients’ understanding of their prognosis. COPE is a promising mechanism to enhance patient-centered communication about prognosis and treatment for patients with incurable cancer.


2003 ◽  
Vol 128 (1) ◽  
pp. 17-26 ◽  
Author(s):  
David J. Kay ◽  
Richard M. Rosenfeld

OBJECTIVE: The goal was to validate the SN-5 survey as a measure of longitudinal change in health-related quality of life (HRQoL) for children with persistent sinonasal symptoms. DESIGN AND SETTING: We conducted a before and after study of 85 children aged 2 to 12 years in a metropolitan pediatric otolaryngology practice. Caregivers completed the SN-5 survey at entry and at least 4 weeks later. The survey included 5 symptom-cluster items covering the domains of sinus infection, nasal obstruction, allergy symptoms, emotional distress, and activity limitations. RESULTS: Good test-retest reliability ( R = 0.70) was obtained for the overall SN-5 score and the individual survey items ( R ≥ 0.58). The mean baseline SN-5 score was 3.8 (SD, 1.0) of a maximum of 7.0, with higher scores indicating poorer HRQoL. All SN-5 items had adequate correlation ( R ≥ 0.36) with external constructs. The mean change in SN-5 score after routine clinical care was 0.88 (SD, 1.19) with an effect size of 0.74 indicating good responsiveness to longitudinal change. The change scores correlated appropriately with changes in related external constructs ( R ≥ 0.42). CONCLUSIONS: The SN-5 is a valid, reliable, and responsive measure of HRQoL for children with persistent sinonasal symptoms, suitable for use in outcomes studies and routine clinical care.


Author(s):  
Albert Tuca Rodríguez ◽  
Miguel Núñez Viejo ◽  
Pablo Maradey ◽  
Jaume Canal-Sotelo ◽  
Plácido Guardia Mancilla ◽  
...  

Abstract Purpose The main aim of the study was to assess the impact of individualized management of breakthrough cancer pain (BTcP) on quality of life (QoL) of patients with advanced cancer in clinical practice. Methods A prospective, observational, multicenter study was conducted in patients with advanced cancer that were assisted by palliative care units. QoL was assessed with the EORTC QLQ-C30 questionnaire at baseline (V0) and after 28 days (V28) of individualized BTcP therapy. Data on background pain, BTcP, comorbidities, and frailty were also recorded. Results Ninety-three patients completed the study. Intensity, duration, and number of BTcP episodes were reduced (p < 0.001) at V28 with individualized therapy. Transmucosal fentanyl was used in 93.8% of patients, mainly by sublingual route. Fentanyl titration was initiated at low doses (78.3% of patients received doses of 67 μg, 100 μg, or 133 μg) according to physician evaluation. At V28, mean perception of global health status had increased from 31.1 to 53.1 (p < 0.001). All scales of EORTC QLQ-C30 significantly improved (p < 0.001) except physical functioning, diarrhea, and financial difficulties. Pain scale improved from 73.6 ± 22.6 to 35.7 ± 22.3 (p < 0.001). Moreover, 85.9% of patients reported pain improvement. Probability of no ≥ 25% improvement in QoL was significantly higher in patients ≥ 65 years old (OR 1.39; 95% CI 1.001–1.079) and patients hospitalized at baseline (OR 4.126; 95% CI 1.227–13.873). Conclusion Individualized BTcP therapy improved QoL of patients with advanced cancer. Transmucosal fentanyl at low doses was the most used drug. Trial registration This study was registered at ClinicalTrials.gov database (NCT02840500) on July 19, 2016.


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