scholarly journals Patient Reported Outcome Measure (PROM) of Quality of Life After Prostatectomy - Results from a 5-Year Study

2013 ◽  
Vol 7 (1) ◽  
pp. 165-173 ◽  
Author(s):  
Liselotte Jakobsson ◽  
Per Fransson
Keyword(s):  
Quality Of Life ◽  
Prostate Cancer ◽  
Social Functioning ◽  
Hormonal Treatment ◽  
Patient Reported Outcome ◽  
Hospital Treatment ◽  
Life Questionnaire ◽  
Physical Problems ◽  
Patient Reported

Prostate cancer is the most common cancer among men in Sweden, and treatment is negatively affecting the patients' quality of life. Even so, long term experiences are sparse and implications for nursing practice are little known. The aim of this study was to determine areas of functioning and factors impacting quality of life, QOL, during and five years after radical prostatectomy (RP) using a quality of life questionnaire and a specific module for prostate cancer. A longitudinal study was performed with consecutively included Swedish men from baseline and after RP treatment (n=222) from 2003 to 2011 to obtain their opinions on quality of life. Data was gathered through a mail out - mail in procedure at baseline, 3 months, 1-3 and 5 years after treatment with a response rate of 94.14% - 75.2%. One reminder was sent on each occasion. Identified areas with increased functioning after five years were emotional and social functioning. QOL ratings did not change over the years. Sexual activity and functioning decreased and hormonal treatment-related symptoms increased. Impact on QOL was found regarding emotional and social functioning, nausea/vomiting, pain and hormone-related symptoms. Increasing age, living with a partner and educational level had no significant impact on QOL. Implications for nursing are to initially focus on physical problems and at times for follow-up visits pay attention also to emotional and social aspects of life. To be able to make a difference in the patient’s life, nurses need to bridge the gap between in-hospital treatment and everyday life outside hospital.

scholarly journals A systematic review of patient-reported outcome measures (PROMs) in cystic fibrosis

BMJ Open ◽  
2020 ◽  
Vol 10 (10) ◽  
pp. e033867
Author(s):  
Irushi Ratnayake ◽  
Susannah Ahern ◽  
Rasa Ruseckaite
Keyword(s):  
Quality Of Life ◽  
Cystic Fibrosis ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Cochrane Library ◽  
Life Questionnaire ◽  
Health Measurement ◽  
Patient Reported

BackgroundTo determine patient-reported outcome measures (PROMs) which may be suitable for incorporation into the Australian Cystic Fibrosis Data Registry (ACFDR) by identifying PROMs administered in adult and paediatric cystic fibrosis (CF) populations in the last decade.MethodsWe searched MEDLINE, EMBASE, Scopus, CINAHL, PsycINFO and Cochrane Library databases for studies published between January 2009 and February 2019 describing the use of PROMs to measure health-related quality of life (HRQoL) in adult and paediatric patients with CF. Validation studies, observational studies and qualitative studies were included. The search was conducted on 13 February 2019. The COnsensus-based Standards for the selection of health Measurement INstruments Risk of Bias Checklist was used to assess the methodological quality of included studies.ResultsTwenty-seven different PROMs were identified. The most commonly used PROMs were designed specifically for CF. Equal numbers of studies were conducted on adult (32%, n=31), paediatric (35%, n=34) and both (27%, n=26) populations. No PROMs were used within a clinical registry setting previously. The two most widely used PROMs, the Cystic Fibrosis Questionnaire—Revised (CFQ-R) and the Cystic Fibrosis Quality of Life Questionnaire (CFQoL), demonstrated good psychometric properties and acceptability in English-speaking populations.DiscussionWe found that although PROMs are widely used in CF, there is a lack of reporting on the efficacy of methods and timepoints of administration. We identified the CFQ-R and CFQoL as the most suitable for incorporation in the ACFDR as they captured significant effects of CF on HRQoL and were reliable and valid in CF populations. These PROMs will be used in a further qualitative study assessing patients’ with CF and clinicians’ perspectives toward the acceptability and feasibility of incorporating a PROM in the ACFDR.PROSPERO registration numberCRD42019126931.

scholarly journals Cohort profile: the Martinique Cancer Registry and the quality of life prostate cancer cohort (QoL Prostate-MQ): challenges and prospects for reducing disparities in the Caribbean

BMJ Open ◽  
2018 ◽  
Vol 8 (7) ◽  
pp. e021540 ◽  
Author(s):  
Clarisse Joachim ◽  
Jacqueline Veronique-Baudin ◽  
Thierry Almont ◽  
Stephen Ulric-Gervaise ◽  
Jonathan Macni ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Prostate Cancer ◽  
Patient Outcomes ◽  
Cancer Registry ◽  
Cancer Registries ◽  
Population Based ◽  
Patient Reported Outcome ◽  
Patient Reported ◽  
The Caribbean

PurposeRecording cancer data in cancer registries is essential for producing reliable population-based data for service planning, monitoring and evaluation. Prostate cancer (PCa) remains the most frequent type of cancer in terms of incidence and mortality in men in the Caribbean. The quality of life PCa cohort will assess quality of life and patient outcomes in Martinique using a digital platform for patient-reported outcome measures.ParticipantsThe Martinique Cancer Registry database is the largest clinical database among the French population-based cancer registries in the Caribbean, including more than 38 000 cancer cases, with 1650 new cancer cases per year, including 550 new PCa cases per year (2010–2014 latest period). In 2018, follow-up will include vital status, assessment of quality of life with the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (QLQ) Core 30 and the Prostate cancer module QLQ-PR25. Urinary incontinence and erectile dysfunction recorded prior to treatment will be analysed 1 and 5 years after treatment.Findings to dateThe registry includes data on circumstances of diagnosis, clinical stage at diagnosis. For PCa, the registry includes blood prostate-specific antigen level at the time of diagnosis, Gleason score and primary treatment.Future plansFurther studies will provide detailed data regarding the quality of diagnosis and management of patients with PCa in Martinique; analysing quality of care will be the next challenge.Quality of life and patient outcomes will be evaluated using a digital platform for patient-reported outcome measurement and electronic records.

scholarly journals Incorporating Quality of Life Metrics in Interventional Oncology Practice

2017 ◽  
Vol 34 (04) ◽  
pp. 313-321 ◽  
Author(s):  
David Li ◽  
David Madoff
Keyword(s):  
Quality Of Life ◽  
Cancer Patients ◽  
Rating Scale ◽  
Numerical Rating Scale ◽  
Brief Pain Inventory ◽  
Patient Reported Outcome ◽  
Life Questionnaire ◽  
European Organization ◽  
Patient Reported

AbstractInterventional radiologists care for a large number of cancer patients with the breadth of palliative intent minimally invasive procedures that we provide. Understanding our meaningful impact on patients' quality of life is essential toward validating our role in the palliation of cancer patients. As such, it is critically important for interventional radiologists to understand common instruments used for the reporting of patient's quality of life measures. Common instruments used to measure pain and quality of life for cancer patients include the numerical rating scale, visual analog scale, brief pain inventory, the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire, and the Functional Assessment of Cancer Therapy. An ideal quality of life instrument should be a patient reported outcome measure across multiple domains (e.g., physical health, psychological, social), and be both validated and reliable.

Can Patient-Reported Outcome Measures Identify Cancer Patients' Most Bothersome Issues?

2011 ◽  
Vol 29 (9) ◽  
pp. 1216-1220 ◽  
Author(s):  
Claire F. Snyder ◽  
Amanda L. Blackford ◽  
Neil K. Aaronson ◽  
Symone B. Detmar ◽  
Michael A. Carducci ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Secondary Data ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Life Questionnaire ◽  
Change Scores ◽  
Patient Reported ◽  
Life Issues ◽  
Chemotherapy Patients

Purpose Patient-reported outcome (PRO) questionnaires are being investigated for their ability to aid in individual patient management. We evaluated whether PROs can identify patients' most bothersome quality-of-life issues and compared approaches for interpreting PRO scores. Methods This secondary data analysis included 130 patients with cancer (mean age, 57 years; 71% female) receiving outpatient palliative chemotherapy. Patients completed a PRO (European Organisation for Research and Treatment of Cancer Core Quality of Life Questionnaire [QLQ-C30]) at up to three consecutive visits and reported one or two of their most bothersome function and symptom issues from categories based on QLQ-C30 domains. We compared two approaches for interpreting PRO scores and identified which way better identified patients' most bothersome issues: worst scores in absolute terms or worst change from the previous time point. Results For patients reporting one bothersome issue, absolute scores identified it correctly 91% of the time for both function and symptoms versus change scores' accuracy of 40% for function and 26% for symptoms. For patients reporting two bothersome issues, absolute scores identified at least one correctly 98% of the time for both function and symptoms versus change scores' 63% for function and 62% for symptoms. Absolute scores identified both issues correctly 42% of the time for function and 66% of the time for symptoms versus change scores' performance of 23% for both function and symptoms. Conclusion Absolute scores identify patients' most bothersome quality-of-life issues better than change scores. These results support the use of PROs in clinical practice and suggest that clinicians may want to focus on the worst absolute scores when examining PRO score reports.

scholarly journals A rare disease patient-reported outcome measure: revision and validation of the German version of the Systemic Sclerosis Quality of Life Questionnaire (SScQoL) using the Rasch model

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Agnes Kocher ◽  
Mwidimi Ndosi ◽  
Kris Denhaerynck ◽  
Michael Simon ◽  
Andrew A. Dwyer ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systemic Sclerosis ◽  
Rasch Analysis ◽  
Disease Patient ◽  
Patient Reported Outcome ◽  
Life Questionnaire ◽  
Patient Reported ◽  
German Speaking ◽  
Rare Disease Patient

Abstract Background Rare disease patient-reported outcome measures (PROMs) require linguistic adaptation to overcome the challenge of geographically dispersed patient populations. Importantly, PROMs such as health-related quality of life (HRQoL) should accurately capture responses to patient-identified concerns. The Systemic Sclerosis Quality of Life Questionnaire (SScQoL) is a 29-item tool validated in six languages. Previous evaluation of the German version revealed problems with dichotomous responses. This study aimed to revise the German SScQoL, extend the response structure, and evaluate content and construct validity, reliability and unidimensionality. Methods The instrument validation study involved revising the German SScQoL response structure, cognitive debriefing with patients and validation using Rasch analysis. The revised SScQoL was completed by Swiss-German-speaking patients with SSc within the Swiss MANagement Of Systemic Sclerosis (MANOSS) study. Rasch analysis was employed to test the validity, reliability and unidimensionality of the revised instrument. Results Based on cognitive debriefing with patients (n = 6) dichotomous items were extended to a polytomous 4-point response structure. A total of 78 patients completed the revised SScQoL. Initial analysis of the 29 items suggested the scale lacked fit to the model (χ2 = 51.224, df = 29, p = 0.007). Grouping items into five domains resulted in an adequate fit to the Rasch model (χ2 = 5.343, df = 5, p = 0.376) and unidimensionality (proportion of significant independent t tests: 0.045, 95% CI 0.016–0.114). Overall, the scale was well targeted, had high internal consistency (Person Separation Index, PSI = 0.931) and worked consistently in patients with different demographic and clinical characteristics. Conclusions The revised German SScQoL has a 4-point response structure and is a valid, reliable measure. Rasch analysis is useful for validating continuous response structure of quality of life measures. Further evaluation of measurement equivalence with other German-speaking cultures is required for multinational comparisons and data pooling.

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