Patient-reported quality of life and biopsychosocial health outcomes in pediatric epilepsy: An update for healthcare providers

Purpose This population-level study was conducted to define the health-related quality of life (HRQL) of individuals living with and beyond colorectal cancer (CRC) and to identify factors associated with poor health outcomes. Patients and Methods All individuals diagnosed with CRC in England in 2010 and 2011 who were alive 12 to 36 months after diagnosis were sent a questionnaire. This included questions related to treatment, disease status, other long-term conditions (LTCs), generic HRQL (EuroQol-5D), and cancer-specific outcomes (Functional Assessment of Cancer Therapy and Social Difficulties Inventory items). Results The response rate was 63.3% (21,802 of 34,467 patients). One or more generic health problems were reported by 65% of respondents, with 10% of patients reporting problems in all five domains. The reporting of problems was higher than in the general population and was most marked in those age less than 55 years. Certain subgroups reported a higher number of problems, notably those with one or more other LTCs, those with active or recurrent disease, those with a stoma, and those at the extremes of the age range (< 55 and > 85 years). Of respondents without a stoma, 16.3% reported no bowel control. Reversal of a stoma resulted in fewer severe bowel problems but more moderate problems than those who had never had a stoma. A quarter of rectal cancer respondents (25.1%) reported difficulties with sexual matters (compared with 11.2% of colon cancer respondents). Conclusion This study demonstrates the success of a national patient-reported outcomes survey. The results have the potential to support system-wide improvement in health outcomes through the identification of particular challenges faced by individuals after treatment for CRC.

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Real-world utilization of quality-of-life data: Perspectives from community oncology providers.

Journal of Clinical Oncology ◽

10.1200/jco.2020.38.29_suppl.286 ◽

2020 ◽

Vol 38 (29_suppl) ◽

pp. 286-286

Author(s):

Bruce A. Feinberg ◽

Jonathan Kish ◽

Yolaine Jeune-Smith ◽

Ting-Chun Yeh ◽

Stephanie Fortier ◽

...

Keyword(s):

Quality Of Life ◽

Real World ◽

Healthcare Providers ◽

Further Education ◽

Routine Practice ◽

Community Oncology ◽

Clinical Scenarios ◽

Patient Reported ◽

Oncology Providers

286 Background: Quality of life (QoL) is commonly assessed in oncology clinical trials. However, it is unclear if oncology healthcare providers (HCPs) perceive value in these metrics or if they impact clinical practice. We sought to assess the real-world utilization of QoL data and barriers to its adoption among US community oncology providers. Methods: Medical oncologists/hematologists, and advanced practice providers (APPs) participated in a survey to assess their perceptions and the utility of QoL data for routine practice during a live meeting in September 2019. Responses were captured via a web-based premeeting survey and an audience response system during the live meeting. Participant characteristics and responses were summarized using descriptive statistics. Results: A total of 71 HCPs (51 physicians and 20 APPs) participated. Regarding perceptions of QoL in oncology, 50% of physicians and 32% of APPs reported aligning with the sentence “It is important to have QoL, but efficacy is obviously the most critical endpoint.” HCPs reported that QoL may outweigh overall survival (OS) in certain clinical scenarios, such as in end-of-life (81%), frail patients (67%), or metastatic tumors (62%). When selecting between two agents with similar efficacy, safety was the most important factor (78%), followed by QoL (40%). 64% of physicians utilized aggregate QoL data from registrational trials or real-world studies to keep informed about QoL of different treatments, while 69% of APPs relied on their personal or practice experiences. 85% of physicians and 84% of APPs responded that it is important to perform formal QoL assessments during routine patient visits. 88% of HCPs expected that QoL/patient-reported outcomes (PRO) collection will increase their workload. Patient burden (58%) and provider resources (43%) were other barriers for QoL/PRO collection. HCPs were largely split regarding their understanding of QoL versus PRO, with 34% reporting that PRO was a subset of QoL and 28% reporting that QoL was a subset of PRO. Conclusions: Efficacy and safety are prioritized as clinical endpoints among oncology HCPs; however, there are certain clinical scenarios where QoL may provide more impactful data for HCPs in managing patients. Barriers remain to successful collection of QoL, and there is a need for further education among HCPs regarding PROs and QoL.

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980: Patient-reported health outcomes and quality of life after peripartum hysterectomy for placenta accreta spectrum (PAS)

American Journal of Obstetrics and Gynecology ◽

10.1016/j.ajog.2017.11.467 ◽

2018 ◽

Vol 218 (1) ◽

pp. S579-S580 ◽

Cited By ~ 1

Author(s):

Karissa Keenan ◽

Brett D. Einerson ◽

Karen J. Gibbins ◽

Emily Callaway ◽

Alex Burringo ◽

...

Keyword(s):

Quality Of Life ◽

Health Outcomes ◽

Placenta Accreta ◽

Peripartum Hysterectomy ◽

Patient Reported ◽

Placenta Accreta Spectrum ◽

Reported Health

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Sleep Quality, Quality of Life, and Patient-Reported Outcomes

Inflammatory Bowel Diseases ◽

10.1093/ibd/izz277 ◽

2019 ◽

Author(s):

Daniel Ceballos

Keyword(s):

Quality Of Life ◽

Sleep Quality ◽

Health Outcomes ◽

Patient Reported Outcomes ◽

Short Term ◽

Patient Reported

Abstract Measuring health outcomes through patient-reported outcomes is a feasible scenario in the short term, more human, and more linked to the situation that the patient cares about, overcoming limitations of the classic activity scores.

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Does the Patient-Reported Apnea Questionnaire (PRAQ) increase patient-centredness in the daily practice of sleep centres? a mixed-methods study

BMJ Open ◽

10.1136/bmjopen-2018-025963 ◽

2019 ◽

Vol 9 (6) ◽

pp. e025963

Author(s):

Inger L Abma ◽

Maroeska M Rovers ◽

Marijke IJff ◽

Bernard Hol ◽

Masha Nägele ◽

...

Keyword(s):

Quality Of Life ◽

Clinical Practice ◽

Mixed Methods ◽

Clinical Care ◽

Healthcare Providers ◽

Obstructive Sleep ◽

Number Of Patients ◽

Patient Reported ◽

Patient Centredness

ObjectivesThe objective of this exploratory study was to see how the Patient-Reported Apnea Questionnaire (PRAQ) may impact the daily clinical practice of sleep centres, and why it may or may not work as expected. The hypotheses were tested that this patient-reported outcome measure makes patients more aware of which of their health complaints may be related to obstructive sleep apnoea (OSA), and that it improves patient-centredness of care by shifting the focus of care away from (only) medical problems towards the individual burden of disease and quality of life.DesignMixed methods. The quantitative study (surveys, patient records) was a before-and-after study.SettingThree sleep centres in The Netherlands (secondary care).Participants27 patients and 14 healthcare professionals were interviewed. 487 patients completed surveys pre-implementation, and 377 patients completed surveys post-implementation of the PRAQ. For the health records, 125 patients were included in the pre-implementation group, and 124 other patients in the post-implementation group.InterventionsThe PRAQ was used in clinical practice for six successive months.Outcome measuresScores on individual survey items, number of patients receiving non-medical treatment, adjustment of treatment at first follow-up, compliance with treatment.ResultsPatients were generally positive about the usefulness of the PRAQ before and during the consultation, as they felt more informed. Healthcare providers did not consider the PRAQ very useful, and they reported minor impact on their consultations. The surveys and health record study did not show an impact of the PRAQ on clinical practice.ConclusionsImplementing the PRAQ may be beneficial to patients, but this study does not show much impact with regard to patient-centredness of care. New Dutch guidelines for OSA care may lead to a greater emphasis on quality of life and value of care for patients, making its integration in clinical care potentially more useful.

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The Effectiveness of a Men-only Supportive Expressive Therapy Group Intervention for Psychosocial Health Outcomes in Gastrointestinal Cancer Patients: A 6-month longitudinal study

10.21203/rs.3.rs-25923/v1 ◽

2020 ◽

Author(s):

Devesh Oberoi ◽

Celestina Martopullo ◽

Barry D. Bultz ◽

Linda Ellen Carlson

Keyword(s):

Quality Of Life ◽

Group Therapy ◽

Health Outcomes ◽

Cancer Patients ◽

Gastrointestinal Cancer ◽

Psychosocial Health ◽

Mood States ◽

Gi Cancer ◽

Patient Reported

Abstract Background An increasing number of gastrointestinal cancer (GI) patients suffer from the side effects of cancer treatment that can affect their psychosocial health outcomes such as mood states and quality of life. Despite its demonstrated usefulness in female cancer patients, the Supportive Expressive Group Therapy (SEGT) has not been tested in male cancer patients. The current study sought to examine the longitudinal effects of a professionally-led, men-only supportive-expressive group therapy (SEGT) on mood states, coping, and quality of life (QoL) in male GI cancer patients.Methods Male GI cancer patients (n = 31), at different stages of cancerand its treatment, were recruited from an ongoing men-only biweekly GI cancer support group. Data were collected at baseline (before or near the beginning of group attendance) and at three months and six months follow-up. All outcomes were patient-reported and included demographic data as well as the validated questionnaires: Profile of Mood States (POMS) for mood states, Functional Assessment of Cancer Therapy-General (FACT-G) for QoL, and Ways of Coping-cancer version (WOC) for coping. Linear mixed models were used to examine the change in the outcomes over time. Effect sizes were estimated using Cohen’s d.Results The Anxiety (p = .04; d = 0.70), Depression (p = .03; d = 0.93) and Anger (p = .04; d = 1.28) subscales of the POMS decreased between baseline and six months. Participants also reported improvements in coping through Distancing (distancing oneself from negative thoughts, being more accepting of the situation, and looking for positives) of the WOC (p = .04; d = 0.4) between baseline and six months. There was no change in any of the FACT subscales (QoL) over time.Conclusions This is the first study to investigate the effects of a SEGT intervention in male cancer patients. SEGT resulted in improved mood states and coping in male GI cancer patients; however, there was no change in measures of QoL. Given the direct effects of SEGT on anxiety, depression and anger, as well as a strong association between anger and depression in men as reported in past studies, SEGT could be impactful in improving psychosocial health outcomes in male GI cancer patients.

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Impact of the COVID-19 pandemic on biopsychosocial health and quality of life among Danish children and adults with neuromuscular diseases (NMD)—Patient reported outcomes from a national survey

PLoS ONE ◽

10.1371/journal.pone.0253715 ◽

2021 ◽

Vol 16 (6) ◽

pp. e0253715

Author(s):

Charlotte Handberg ◽

Ulla Werlauff ◽

Ann-Lisbeth Højberg ◽

Lone F. Knudsen

Keyword(s):

Quality Of Life ◽

High Risk ◽

Negative Impact ◽

Neuromuscular Diseases ◽

Social Contact ◽

Severe Illness ◽

Patient Reported ◽

Biopsychosocial Health ◽

The Impact

The purpose was to investigate the impact of the COVID-19 pandemic on biopsychosocial health, daily activities, and quality of life among children and adults with neuromuscular diseases, and to assess the prevalence of COVID-19 infection and the impact of this in patients with neuromuscular diseases. The study was a national questionnaire survey. Responses were obtained from 811 adults (29%) and 67 parents of children (27%) with neuromuscular diseases. Many patients reported decreased health or physical functioning, and changes in access to physiotherapy or healthcare due to the pandemic. Participants generally perceived themselves or their child to be at high risk of severe illness from COVID-19, but only 15 patients had suffered from COVID-19 and experienced mild flu-like symptoms. 25.3% of adults and 46.6% of parents experienced anxiety. 20.4% of adults and 27.6% of parents experienced symptoms of depression. In general, the pandemic contributed to anxiety, a depressed mood as well as to fewer leisure activities, less social contact, isolation from work/school and a reduced quality of life, in particular for patients who perceived themselves to be at high risk of severe illness. The results demonstrate that the pandemic has had a negative impact on biopsychosocial health and quality of life of patients with neuromuscular diseases.

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Knowledge translation resources to support the use of quality of life assessment tools for the care of older adults living at home and their family caregivers

Quality of Life Research ◽

10.1007/s11136-021-03011-z ◽

2021 ◽

Author(s):

Kara Schick-Makaroff ◽

Richard Sawatzky ◽

Lena Cuthbertson ◽

Joakim Öhlén ◽

Autumn Beemer ◽

...

Keyword(s):

Quality Of Life ◽

Older Adults ◽

Knowledge Translation ◽

Family Caregivers ◽

Healthcare Providers ◽

Decision Makers ◽

Assessment Tools ◽

Life Assessment ◽

Patient Reported

Abstract Purpose To support the use of quality of life (QOL) assessment tools for older adults, we developed knowledge translation (KT) resources tailored for four audiences: (1) older adults and their family caregivers (micro), (2) healthcare providers (micro), (3) healthcare managers and leaders (meso), and (4) government leaders and decision-makers (macro). Our objectives were to (1) describe knowledge gaps and resources and (2) develop corresponding tailored KT resources to support use of QOL assessment tools by each of the micro-, meso-, and macro-audiences. Methods Data were collected in two phases through semi-structured interviews/focus groups with the four audiences in Canada. Data were analyzed using qualitative description analysis. KT resources were iteratively refined through formative evaluation. Results Older adults and family caregivers (N = 12) wanted basic knowledge about what “QOL assessment” meant and how it could improve their care. Healthcare providers (N = 13) needed practical solutions on how to integrate QOL assessment tools in their practice. Healthcare managers and leaders (N = 14) desired information about using patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) in healthcare programs and quality improvement. Government leaders and decision-makers (N = 11) needed to know how to access, use, and interpret PROM and PREM information for decision-making purposes. Based on these insights and evidence-based sources, we developed KT resources to introduce QOL assessment through 8 infographic brochures, 1 whiteboard animation, 1 live-action video, and a webpage. Conclusion Our study affirms the need to tailor KT resources on QOL assessment for different audiences. Our KT resources are available: www.healthyqol.com/older-adults.

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Association of Physical Morbidity and Health-Related Quality of Life in a Representative Sample of Older German People

European Journal of Health Psychology ◽

10.1027/2512-8442/a000019 ◽

2018 ◽

Vol 25 (4) ◽

pp. 140-151

Author(s):

Markus A. Wirtz ◽

Matthias Morfeld ◽

Elmar Brähler ◽

Andreas Hinz ◽

Heide Glaesmer

Keyword(s):

Quality Of Life ◽

Representative Sample ◽

Short Form ◽

Physical Symptoms ◽

German Population ◽

Health Related Quality ◽

Patient Reported ◽

Related Quality ◽

Health Related

Abstract. The association between health-related quality of life (HRQoL; Short-Form Health Survey-12; SF-12) and patient-reported morbidity-related symptoms measured by the Patient Health Questionnaire-15 (PHQ-15) is analyzed in a representative sample of older people in the general German population. Data from 1,659 people aged 60 to 85 years were obtained. Latent class analysis identified six classes of patients, which optimally categorize clusters of physical symptoms the participants reported: musculoskeletal impairments (39.8%), healthy (25.7%), musculoskeletal and respiratory/cardiac impairments (12.8%), musculoskeletal and respiratory impairments, along with bowel and digestion problems (12.9%), general impairments (4.9%), and general impairments with no bowel and digestion problems (4.8%). The participants’ SF-12 Physical Health Scores (η2 = .39) and their Mental Health Scores (η2 = .28) are highly associated with these latent classes. These associations remain virtually identical after controlling for age. The results provide evidence that profiles of patient-reported physical impairments correspond strongly with reduced HRQoL independently from aging processes.

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