scholarly journals Development and preliminary psychometric investigation of the German Satisfaction with Comprehensive Cancer Care (SCCC) Questionnaire

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Peter Esser ◽  
Leon Sautier ◽  
Susanne Sarkar ◽  
Georgia Schilling ◽  
Carsten Bokemeyer ◽  
...  
Keyword(s):  
Patient Satisfaction ◽  
Cancer Care ◽  
Convergent Validity ◽  
Psychosocial Support ◽  
Psychosocial Care ◽  
Symptom Burden ◽  
Discriminatory Power ◽  
Global Satisfaction ◽  
Oncological Treatment ◽  
Tumor Entities

Abstract Purpose The assessment of patient satisfaction during treatment is essential to provide patient-centered high-quality cancer care. Nevertheless, no German instrument assesses patient satisfaction with comprehensive cancer care, which not only includes oncological treatment, but also interpersonal quality of care as well as psychosocial support services. Based on the French REPERES-60, we developed the German Patient Satisfaction with Comprehensive Cancer Care (SCCC) questionnaire. Methods The REPERES-60 was translated and the items were adapted to make it applicable to the German healthcare system and across different tumor entities. Scales of the resulting instrument were extracted via principal axis factoring (PAF). Subsequently, we investigated the reliability (Cronbach’s Alpha, CA), discriminatory power (corrected item-scale correlations) and convergent validity (pre-specified correlations of the SCCC with different outcomes). Results The SCCC consisted of 32 items which were subsequently tested among a sample of 333 patients across different tumor entities (response rate: 47%). Average age was 59 years (standard deviation: 14), 63% were male. PAF revealed four multi-item scales named Competence, Information, Access and Support accounting for 71% of the variance. Two single-items scales assess global satisfaction with medical and psychosocial care, respectively. CA across the multi-item scales ranged from .84 to .96. Discriminatory power was sufficiently high, with all r ≥ .5. Convergent validity was largely verified by negative associations of the four multi-item scales with depressive/anxious symptomatology (r ≥ − .18, p < .01) and fatigue/overall symptom burden (r ≥ − .14, p < .01). Conclusion We developed a tool to assess patient satisfaction with comprehensive cancer care in Germany. The SCCC showed satisfactory psychometric properties. Further studies are needed to verify these preliminary findings.

PCN224 Incorporating a Patient-Reported Symptom Burden Tool in Cancer Care Settings

2021 ◽  
Vol 24 ◽  
pp. S61-S62
Author(s):  
T. Conner ◽  
D. Raju ◽  
R. Hauser ◽  
T. Gyory
Keyword(s):  
Cancer Care ◽  
Symptom Burden ◽  
Patient Reported

scholarly journals Preparing for partnerships in cancer care: an explorative analysis of the role of family-based caregivers

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Reema Harrison ◽  
Madhav Raman ◽  
Ramesh Lahiru Walpola ◽  
Ashfaq Chauhan ◽  
Ursula M. Sansom-Daly
Keyword(s):  
Ethnic Minority ◽  
Cancer Care ◽  
Psychosocial Support ◽  
Clinical Care ◽  
Medication Administration ◽  
Substantial Contribution ◽  
Clinical Aspects ◽  
Management Support ◽  
Unique Challenge ◽  
Family Based

Abstract Background Family-based ‘informal’ caregivers are critical to enable sustainable cancer care that produces optimal health outcomes but also gives rise to psychological burdens on caregivers. Evidence of psychosocial support for caregivers does not currently address the impacts of their role in providing clinical and health-related care for their loved ones. The present study sought to address this gap including with those from priority populations. Methods Qualitative data was collected using focus group and interview methods. We purposively sampled caregivers identified as having a high burden of responsibility for providing clinical care including those from ethnic minority backgrounds, parental caregivers and those living rurally. Transcripts were subject to thematic analysis utilising a team-based approach. Results Family-based caregivers included spouses (11), parents (7), children (1), siblings (1). Ten participants were from ethnic minority backgrounds and five participants were from regional or rural locations. Four resulting inter-related themes were; 1) Dual burden of providing clinical care and managing personal emotional distress; 2) Navigating healthcare partnership dynamics; 3) Developing a caregiving skillset, and 4) Unique supportive needs and barriers to access. These data provide evidence of the unique challenge of providing clinical care as part of family-based caregiving for a loved one with cancer, and the absence of support for caregivers to take up this role. Conclusion Our findings highlight the substantial contribution of family-based caregivers to the provision of cancer care in contemporary health systems. Inadequate support for caregivers is apparent with regard to their role in providing clinical aspects of care such as medication administration and management. Support programs to prepare caregivers to provide clinical care while building capacity to manage their stressors and emotions through this challenging period may be valuable towards sustainable, person-centred care.

scholarly journals Psychometric validation of a Patient-Centred Quality of Cancer Care Questionnaire in Mexico

BMJ Open ◽  
2020 ◽  
Vol 10 (3) ◽  
pp. e033114 ◽  
Author(s):  
Svetlana V Doubova ◽  
Ingrid Patricia Martinez-Vega ◽  
Marcos Gutiérrez-De-la-Barrera ◽  
Claudia Infante-Castañeda ◽  
Carlos E Aranda-Flores ◽  
...  
Keyword(s):  
Supportive Care ◽  
Cancer Care ◽  
Convergent Validity ◽  
Supportive Care Needs ◽  
Psychometric Validation ◽  
Cronbach’S Alpha ◽  
Care Needs ◽  
Cronbach's Alpha ◽  
Quality Of Life Scale

ObjectivesTo develop and validate a Patient-Centred Quality of Cancer Care Questionnaire in Spanish (PCQCCQ-S) appropriate to the Mexican context.DesignPsychometric validation of a questionnaire.SettingTwo public oncology hospitals in Mexico City.Participants1809 patients with cancer aged ≥18 years.Source of informationCross-sectional survey.MethodsThe validation procedures comprised (1) content validity through a group of experts and patients; (2) item reduction and evaluation of the factor structure, through an exploratory factor analysis based on the polychoric correlation matrix; (3) internal consistency using Cronbach’s alpha; (4) convergent validity between the PCQCCQ-S and supportive care needs scale; (5) correlation analysis between the PCQCCQ-S and quality of life scale by calculating Spearman’s rank-correlation coefficient; and (6) differentiation by ‘known groups’ through the Wilcoxon rank-sum test.ResultsThe PCQCCQ-S has 30 items with the following five factors accounting for 96.5% of the total variance: (1) timely care; (2) clarity of the information; (3) information for treatment decision-making; (4) activities to address biopsychosocial needs; and (5) respectful and coordinated care. Cronbach’s alpha values ranged from 0.73 to 0.90 among the factors. PCQCCQ-S has moderate convergent validity with supportive care needs scale, revealing that higher quality is correlated with lower patient needs. PCQCCQ-S has acceptable ability to differentiate by ‘known groups’, showing that older patients and those with low levels of education perceived lower total quality of care as compared with their counterparts.ConclusionPCQCCQ-S has acceptable psychometric properties and can be used to measure quality of patient-centred cancer care in Mexico and serve as a reference to develop PCQCCQ-S in other Spanish-speaking countries.

scholarly journals Prescreening of Patient-reported Symptoms using the Edmonton Symptom Assessment System (ESAS) in Outpatient Palliative Cancer Care

2019 ◽  
Author(s):  
Garden Lee ◽  
Han Sang Kim ◽  
Si Won Lee ◽  
Eun Hwa Kim ◽  
Bori Lee ◽  
...  
Keyword(s):  
Palliative Care ◽  
Cancer Care ◽  
Severe Symptom ◽  
Symptom Burden ◽  
Symptom Assessment ◽  
Assessment System ◽  
Advanced Cancer Patients ◽  
Edmonton Symptom Assessment System ◽  
Patient Reported

Abstract Background: Although early palliative care is associated with a better quality of life and improved outcomes in end-of-life cancer care, the criteria of palliative care referral are still elusive. Methods: We collected patient-reported symptoms using the Edmonton Symptom Assessment System (ESAS) at the baseline, first, and second follow-up visit. The ESAS evaluates ten symptoms: pain, fatigue, nausea, depression, anxiety, drowsiness, dyspnea, sleep disorder, appetite, and wellbeing. A total of 71 patients were evaluable, with a median age of 65 years, male (62%), and the Eastern Cooperative Oncology Group (ECOG) performance status distribution of 1/2/3 (28%/39%/33%), respectively. Results: Twenty (28%) patients had moderate/severe symptom burden with the mean ESAS ≥5. Interestingly, most of the patients with moderate/severe symptom burdens (ESAS ≥5) had globally elevated symptom expression. While the mean ESAS score was maintained in patients with mild symptom burden (ESAS<5; 2.7 at the baseline; 3.4 at the first follow-up; 3.0 at the second follow-up; P =0.117), there was significant symptom improvement in patients with moderate/severe symptom burden (ESAS≥5; 6.5 at the baseline; 4.5 at the first follow-up; 3.6 at the second follow-up; P <0.001). Conclusions: Advanced cancer patients with ESAS ≥5 may benefit from outpatient palliative cancer care. Prescreening of patient-reported symptoms using ESAS can be useful for identifying unmet palliative care needs in advanced cancer patients.

scholarly journals Stopping to Listen: Using Qualitative Methods to Inform a Web-Based Platform for Adults With Neurofibromatosis

2021 ◽  
Vol 8 ◽  
pp. 237437352110496
Author(s):  
Ethan G. Lester ◽  
Paula J. Popok ◽  
Victoria A. Grunberg ◽  
Alejandro Baez ◽  
Farahdeba Herrawi ◽  
...  
Keyword(s):  
Psychosocial Support ◽  
Qualitative Interviews ◽  
Psychosocial Care ◽  
Barriers And Facilitators ◽  
Web Based ◽  
Positive Attitudes ◽  
Efficient Access ◽  
Semistructured Interviews ◽  
Life Context ◽  
Specific Factors

Introduction: Psychosocial care for people with neurofibromatosis (NF) is challenging to access. Therefore, we sought to develop a self-guided web-based treatment platform for people with NF based on the live video relaxation response resiliency program for NF (3RP-NF). Here we report on qualitative interviews with adult patients who participated in the 3RP-NF to: (a) understand participant perceptions of the 3RP-NF program and (b) gather feedback for a self-guided web-based treatment platform (i.e., NF-Web). Methods: We conducted individual semistructured interviews ( N = 23; videoconferencing). We utilized both the Framework method and a hybrid deductive and inductive approach to analyze qualitative data. Results: We examined findings within the following themes for both 3RP-NF and NF-Web: (a) general attitudes, (b) barriers and facilitators, and (c) program-specific factors. Participants endorsed positive attitudes towards the 3RP-NF and NF-Web and described unique barriers and facilitators to each and provided suggestions regarding technology, NF-specific needs, and ways to promote social support virtually. Conclusions: This study highlights the importance of gathering participant feedback when designing novel, illness-specific interventions. In future studies, we aim to provide people with NF effective and efficient access to psychosocial support that matches their needs and life context. Results are informing NF-Web development.

scholarly journals Organizing Psycho-Oncological Care for Cancer Patients: The Patient’s Perspective

2021 ◽  
Vol 12 ◽  
Author(s):  
Anouk S. Schuit ◽  
Karen Holtmaat ◽  
Valesca van Zwieten ◽  
Eline J. Aukema ◽  
Lotte Gransier ◽  
...  
Keyword(s):  
Cancer Patients ◽  
Cancer Care ◽  
Healthcare Providers ◽  
Structured Interviews ◽  
Oncological Treatment ◽  
Face To Face ◽  
Patient’S Perspective ◽  
Oncological Care ◽  
After Cancer ◽  
To Receive

BackgroundCancer patients often suffer from psychological distress during or after cancer treatment, but the use of psycho-oncological care among cancer patients is limited. One of the reasons might be that the way psycho-oncological care is organized, does not fit patients’ preferences. This study aimed to obtain detailed insight into cancer patients’ preferences regarding the organization of psycho-oncological care.Methods18 semi-structured interviews were conducted among cancer patients. Patients completed psycho-oncological treatment between 2015 and 2020 at the psychology department in a general hospital or a center specialized in psychological cancer care in the Netherlands. The interview comprised questions related to preferences regarding the institute where to receive treatment, the psychologist who provides treatment, and the type of treatment, as well as questions related to experienced barriers and facilitators to receive psycho-oncological care. Interviews were digitally recorded and transcribed verbatim. Data were analyzed individually by two coders into key issues and themes.ResultsRegarding the institute, easy accessibility and prompt availability of psychol-oncological care were considered important. Regarding the psychologist, most participants had a strong preference to be treated by a psychologist specialized in cancer or other somatic diseases. Individual face-to-face therapy was preferred above other types of treatment. Several barriers were mentioned to receive psycho-oncological treatment, among which poor accessibility to psycho-oncological care, lack of knowledge on the possibilities for psycho-oncological treatment, and stigma. Most frequently mentioned facilitators were being assertive to ask for help, having a good relationship with the healthcare professional, and the integration of psycho-oncological support within medical cancer care.ConclusionFrom the patient’s perspective, the organization of psycho-oncological care for cancer patients should focus on easy accessibility and availability, delivered by specialized psychologists, and integration in medical cancer care. Online and group therapy are acceptable, but individual face-to-face therapy is preferred. It is warranted to increase awareness on psycho-oncological care targeting both patients and healthcare providers.

scholarly journals Practice patterns of multidisciplinary team meetings in Korean cancer care and patient satisfaction with this approach

2020 ◽  
Vol 35 (1) ◽  
pp. 205-214 ◽  
Author(s):  
Chi Hoon Maeng ◽  
Hee Kyung Ahn ◽  
Sung Yong Oh ◽  
Seungtaek Lim ◽  
Bong-Seog Kim ◽  
...  
Keyword(s):  
Patient Satisfaction ◽  
Multidisciplinary Team ◽  
Cancer Care ◽  
Practice Patterns ◽  
Team Meetings ◽  
Multidisciplinary Team Meetings

Properties of the 15D and the Nottingham Health Profile questionnaires in patients with lower limb atherosclerotic disease

2007 ◽  
Vol 23 (3) ◽  
pp. 385-391 ◽  
Author(s):  
Kirsi Koivunen ◽  
Harri Sintonen ◽  
Hannele Lukkarinen
Keyword(s):  
Construct Validity ◽  
Lower Limb ◽  
Convergent Validity ◽  
Elective Surgery ◽  
Nottingham Health Profile ◽  
Discriminatory Power ◽  
Health Profile ◽  
Full Data ◽  
Cross Sectional ◽  
Group Comparisons

Objectives:The aim of this study was to compare the generic health-related quality of life (HRQoL) instruments, the 15D and the Nottingham Health Profile (NHP), in terms of feasibility, cross-sectional construct validity, discriminatory power, and responsiveness to the change in patients with lower limb atherosclerosis disease (LLAD).Methods:Patients who were treated conservatively (64 patients), scheduled for endovascular treatment (85 patients), or for elective surgery (31 patients) filled in the NHP and the 15D questionnaires before treatment and 12 months after. The methods of analysis included calculations of the completion rate, the multitrait–multimethod matrix, extreme group comparisons with thet-test, and calculations of “floor” and “ceiling” effects and effect sizes.Results:Both the 15D and the NHP instruments were feasible because full data were obtained at baseline from 84.1 percent of patients and 82 percent at 12 months with the 15D and, respectively, 75.8 percent and 79 percent with the NHP. The multitrait–multimethod matrix and extreme group comparisons provided a clear convergent and discriminant evidence of the cross-sectional construct validity of the instruments. The convergent validity correlations were quite high, ranging between .40 and .682. The tendency for higher percentages at the “ceiling” and “floor” for the NHP suggests that it has less discriminatory power than the 15D on roughly comparable dimensions. The 15D and the NHP were almost equally responsive to change.Conclusions:This study provided evidence that both the 15D and the NHP are appropriate for measuring HRQoL among patients with LLAD.

Mobile and comprehensive assessment of patient-reported outcomes (PRO) in routine inpatient cancer care: A three-arm randomized controlled feasibility study.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e18664-e18664
Author(s):  
Hanna Salm ◽  
Leopold Hentschel ◽  
Michael Kramer ◽  
Daniel Pink ◽  
Markus K Schuler
Keyword(s):  
Hospital Stay ◽  
Cancer Care ◽  
Symptom Burden ◽  
Satisfaction With Care ◽  
Control Group ◽  
Inpatient Setting ◽  
Daily Routine ◽  
Patients Satisfaction ◽  
Patient Reported ◽  
Group A

e18664 Background: Most of the work on PRO has been done in outpatient setting. However, cancer patients might even suffer from more severe problems when admitted to hospital for anticancer therapy. The question whether and how patients’ well-being changes during the course of the hospital stay and if electronically assessed PRO (ePRO) will bring benefit to patients and physicians remains unanswered. Implementing such a tool into routine clinical care can be considered as an additional challenge.The objectives of this study were to implement a multidimensional ePRO system to improve patient-physician interaction in inpatient cancer care and test its feasibility. A comprehensive set of PRO measures that would broadly assess the patient’s situation was developed by a multidisciplinary expert team. Before study initiation, semi-structured interviews with patients were carried out to optimize visualization and user experience. The tool included a rapid response ePRO system with a patient-tailored graphical feedback for physicians. The effect of the mobile tool on quality of life (QoL), symptom burden and patients’ satisfaction with care were explored. Methods: The study is an interventional, three-arm and multicenter inpatient trial. A self-administered questionnaire based on validated PRO-measures was applied and completed at admission, one week after and at discharge. Group A (intervention arm) and B received tablet versions while group C (control) completed the questionnaire on paper. Additional to the mere assessment of electronic patient reported outcome, results from group A were presented graphically to the treating physicians. Standardized instruments included measures of QoL (EORTC QLQ-C30), patients’ satisfaction with care (IN-PATSAT32) and adverse events (PRO-CTCAE). A feasibility questionnaire was administered to arm A and B. Results: N = 185 patients (mean age 63.5, 44.3% female) were recruited in oncology wards. 62% of patients were treated for oncological disease (33% with stage IV disease) and 37% for hematological disease. Feasibility questions revealed that the majority of patients preferred the electronic tool and believed that the tool was of high value for individualized patient care. Among others, symptom burden and global QoL did not significantly change during hospital stay. Satisfaction with care was significantly lower ( p = 0.047) in the intervention group (mean 3.55) versus the control group (mean 3.77) with scores ranging from 0-5. Conclusions: Results indicate that the intervention is feasible. Some of the results are counterintuitive and could possibly be influenced by a lack of physician compliance due to a busy daily routine. Moreover, the optimal interval and composition of questionnaires has yet to be determined in inpatient setting.

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