Current state of quality of life and patient-reported outcomes research

Bottomley, Andrew; Reijneveld, Jaap C.; Koller, Michael; Flechtner, Hans‐Henning; Tomaszewski, Krzysztof A.; Greimel, Eva; Ganz, Patricia A.; Ringash, Jolie; O’Connor, Daniel; Kluetz, Paul G.; Tafuri, Giovanni; Grøenvold, Mogens; Snyder, Claire; Gotay, Carolyn; Fallowfield, Dame Lesley; Apostolidis, Kathi; Wilson, Roger; Stephens, Richard; Schünemann, Holger J.; Calvert, Melanie; Holzner, Bernhard; Musoro, Jammbe Z.; Wheelwright, Sally; Martinelli, Francesca; Dueck, Amylou C.; Pe, Madeline; Coens, Corneel; Velikova, Galina; Kuliš, Danijela; Taphoorn, Martin J.B.; Darlington, Anne‐Sophie; Lewis, Ian; Poll-Franse, Lonneke van de

doi:10.1016/j.ejca.2019.08.016

Cited by 101 publications

(86 citation statements)

References 31 publications

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“…Local modalities and systemic anticancer therapies, therefore, lead to improve patients’ survival outcomes including disease-free survival and overall survival [ 3 ]. However, since the disease diagnosis and treatment have improved greatly over time, at present in addition to survival, quality of life has become an important outcome measure in breast cancer clinical investigations and survivorship studies [ 4 , 5 ]. Hopefully, at present a compile of evidence exist on the topic and sometimes even it is very difficult to adhere to evidence in practice since conflicting findings are reported.…”

Section: Introductionmentioning

confidence: 99%

Health-related quality of life in breast cancer patients: review of reviews from 2008 to 2018

Mokhatri-Hesari

Montazeri

2020

Health Qual Life Outcomes

229

169

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Background Breast cancer still is a topic. This overview of the literature aimed to update the current knowledge on quality of life in breast cancer patients. Methods A review of literature in MEDLINE, Cochrane Database of Systematic Reviews and Google Scholar were carried out to identify review papers on health-related quality of life in breast cancer during the 2008 to 2018. All publications were screened using the PRISMA guideline. The methodological quality of reviews was assessed using the AMSTAR. The findings were summarized and tabulated accordingly. Results Within over a decade, a total of 974 review papers were identified which according to the study selection criteria finally we have evaluated 82 reviews. Of these about 85% had a reasonable methodological quality. The findings were mainly summarized on several headings including instruments used to measure quality of life, treatment, supportive care, psychological distress, and symptoms. Questionnaires had a good performance to quantify quality of life in breast cancer patients. Most reviews were focused on the impact of treatment including endocrine therapy as well as integrating complementary and alternative medicine into the current practice. According to the reviews, yoga was the most recommended exercise to improve quality of life in breast cancer patients. Conclusion Overall, the findings from this overview indicated that quality of life in breast cancer patients enhanced during the last decade. Several simple but effective interventions such as physical activity and psychosocial interventions proved to be effective in improving quality of life in this population. However, management of symptoms such as pain, and lymphedema, issues related to worry, sexual function especially for young patients, and the future outlooks all are among topics that deserve further consideration. Also, this overview indicated that methodological issues in measuring quality of life in breast cancer patients improved greatly, but still there is a long way to go to understand what really matter to patients.

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Section: Introductionmentioning

confidence: 99%

Health-related quality of life in breast cancer patients: review of reviews from 2008 to 2018

Mokhatri-Hesari

Montazeri

2020

Health Qual Life Outcomes

229

169

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“…These data con rmed our expectation that more global outcome domains would be preferable. Similar to trials in oncology (31) and as part of the COS of the BARIACT project(17), we selected "quality of life" as one patient-relevant outcome parameter that would encompass multiple identi ed items. As our second potential outcome, we chose a reduced rate of hypoglycemic episodes.…”

Section: Resultsmentioning

confidence: 99%

Patient Involvement to Inform the Design of a Clinical Trial in Postbariatric Hypoglycemia

Hepprich¹,

Donath

Hemkens

2020

Preprint

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Background: Bariatric surgery may lead to symptomatic postprandial hypoglycemia as a major side effect without established therapy so far. We aimed to develop an evidence-based study design of a clinical trial that tests treatment options and can provide useful patient-relevant evidence.Methods: We searched systematically for guidance of core outcome sets to determine the most relevant types of outcomes and duration of such a trial. Our search comprised literature databases, a database of core outcome sets and self-help organizations. We then developed a simple online questionnaire based on interviews with German-speaking patients with postprandial hypoglycemia after bariatric surgery. We recruited participants by reaching out to all German speaking endocrinologists in Switzerland and large Swiss bariatric centers. We asked for preferences regarding outcome types and acceptable duration of being included in a corresponding clinical trial.Results: The systematic search did not identify evidence-based guidance for informing our study design. Experience of clinical and research routine as well as patient interviews helped in identifying potential outcomes and the design of an online questionnaire. Therein, a total of 29 persons started the questionnaire and 22 answered questions related to the primary outcome. Of these, 17 (77.3%) deemed quality of life more relevant as primary outcome than the rate of hypoglycemic episodes. A trial length of four weeks or longer was regarded as acceptable for 19 of 21 respondents to this question (91.4 %) and of six months or longer for 12 respondents (56 %). Conclusions: In situations with no other guidance, a simple questionnaire may help to inform trial design decisions. This study identifies a patient preference for “quality of life” as a primary outcome and supports the evidence-based conception of a patient-centered clinical trial in postbariatric hypoglycemia.

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“…However since the publication of these studies, no comparable data have been presented thus questioning how to achieve these goals. In a report from the 5th EORTC Quality of Life in Clinical Cancer Trials Conference, 2019, it was stated that even in clinical trials there were no standards for PRO measurement, analysis and reporting, and a major issue may be to ensure that 'the right questions are asked and the right answers are communicated' [5]. To overcome these hurdles several scientific collaborations have attempted to provide guidelines for the use and analysis of PROs [6][7][8][9][10].…”

Section: Editorialmentioning

confidence: 99%

Expectations to Patient-Reported Outcome (PRO) in Oncology – PRO for a purpose, when and how?

Pappot

Taarnhøj

2020

Acta Oncologica

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Current state of quality of life and patient-reported outcomes research

Cited by 101 publications

References 31 publications

Health-related quality of life in breast cancer patients: review of reviews from 2008 to 2018

Health-related quality of life in breast cancer patients: review of reviews from 2008 to 2018

Patient Involvement to Inform the Design of a Clinical Trial in Postbariatric Hypoglycemia

Expectations to Patient-Reported Outcome (PRO) in Oncology – PRO for a purpose, when and how?

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