Measuring Quality of Life in Routine Oncology Practice Improves Communication and Patient Well-Being: A Randomized Controlled Trial

Velikova, Galina; Booth, Laura; Smith, Adam B.; Brown, Paul; Lynch, Pamela; Brown, Julia; Selby, Peter J.

doi:10.1200/jco.2004.06.078

Cited by 1,188 publications

(1,079 citation statements)

References 28 publications

(4 reference statements)

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“…Among woman who expressed high initial psychological needs, those who received the intervention experienced a greater reduction in psychological needs compared with those who did not receive the intervention. This finding reinforces the importance of assessing individual needs and providing this information to the treatment team for intervention, in line with Velikova et al (2004) earlier work. It also reflects earlier findings (McArdle et al, 1996) that showed that empathy combined with information reduced psychological distress in women with breast cancer.…”

Section: Discussionsupporting

confidence: 88%

“…Very few trials have investigated brief interventions, and those that have tended not to produce significant change, probably due to the lack of systematic individual tailoring (Newell et al, 2002). One exception was a study by Velikova et al (2004). This study showed that systematically assessing patients' quality of life and providing this information to the treating doctor improved patient quality of life and emotional functioning.…”

Section: The Present Studymentioning

confidence: 97%

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Meeting the support and information needs of women with advanced breast cancer: a randomised controlled trial

et al. 2006

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Addressing psychosocial and quality of life needs is central to provision of excellent care for people with advanced cancer. This study tested a brief nurse-delivered intervention to address the needs of urban women with advanced breast cancer. This study was conducted at four large urban hospitals in Australia. One hundred and five women with advanced breast cancer were recruited and randomised to receive the intervention or usual care, then asked to complete the European Organisation of Research and Treatment of Quality of life Q-C30 version (2.0) (EORTC Q-C30) (version 2) and Supportive Care Needs Survey (SCNS) at 1 month and 3 months postrecruitment. No significant differences were detected between intervention and usual care groups in the SCNS or the EORTC Q-C30 subscale scores. However, when the groups were divided into high needs (score of above 50) and low baseline needs (score of 50 or below) for each SCNS subscale, a significant difference between intervention and usual care groups was found in the psychological/emotional subscale among women with high baseline needs. In conclusions, this study demonstrated that a faceto-face session and follow-up phone call with a breast care nurse significantly reduced the psychological and emotional needs of those with high initial needs. There was no evidence of the intervention influencing the quality of life; or perceived needs of women with low initial psychological/emotional needs or perceived needs in other domains. Possibly, the intervention was not sufficiently intense to achieve an effect. British Journal of Cancer (2006) Advanced breast cancer is the most common cause of cancer death in women from developed countries (Stewart and Kleihues, 2003). When a person has incurable disease, optimising quality of life and meeting the woman's psychosocial and information needs must be central to excellent care . Extending survival time with aggressive treatments without considering these issues may do more harm than good. It is critical to address the substantial psychosocial and informational needs of people with advanced cancer Aranda et al, 2005). This study reports a trial of a brief, structured, nurse-delivered intervention designed to meet the psychosocial, informational and self-care needs of women with advanced breast cancer. Previous research on psycho-educational interventions with people with cancerIn a systematic review (Newell et al, 2002) of psychological interventions for cancer patients, it was concluded that a range of interventions including group-based and individual therapies, informational and educational interventions, guided imagery and cognitive behavioural therapies showed promise for improving patient outcomes and warranted further rigorous research.Many studies involving psycho-educational interventions for women with breast cancer have demonstrated positive results; however, the majority of them were delivered by a trained psychologist or psychiatrist (Newell et al, 2002). Another recent systematic review of psychological group intervent...

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Section: Discussionsupporting

confidence: 88%

Section: The Present Studymentioning

confidence: 97%

Meeting the support and information needs of women with advanced breast cancer: a randomised controlled trial

et al. 2006

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“…relaxation techniques, developmentally appropriate distraction) are highly effective in reducing pain and anticipatory fear (Duff 2003). It has been shown in other chronic paediatric diseases that addressing social issues and emotional distress during regular hospital follow-ups is supportive and that the use of HrQoL questionnaires (Santana and Feeny 2013) significantly increases meaningful patient-physician communication and patient well-being (Velikova et al 2004). …”

Section: Discussionmentioning

confidence: 99%

Living with Intoxication-Type Inborn Errors of Metabolism: A Qualitative Analysis of Interviews with Paediatric Patients and Their Parents

et al. 2016

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Introduction: Progress in diagnosis and treatment of patients with intoxication-type inborn errors of metabolism (IT-IEM) such as urea cycle disorders, organic acidurias or maple syrup urine disease is resulting in a growing number of long-term survivors. Consequently, health-related quality of life (HrQoL) of patients is increasingly regarded as a meaningful outcome parameter. To develop the first validated, disease-specific HrQoL questionnaire for IT-IEM, patients and parents were interviewed as content experts to identify major physical and psychosocial constraints and resources.Methods: Focus group interviews with 19 paediatric IT-IEM patients and 26 parents were conducted in four metabolic centres in Austria, Germany and Switzerland. Disease-specific HrQoL categories were established by qualitative content analysis.Results: Fourteen disease-specific topics related to the three well-established generic HrQoL dimensions of physi-

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“…Moreover, it was felt that patient-reported adverse event information should be incorporated into published study results and drug labels. These findings reflect an overall movement in clinical research and drug regulatory policy towards favoring patient self-reports for those experiences best known to the patient, such as symptoms [3][4][5][13][14][15][16][17][18]. Of particular note is the FDA's recent guidance for industry on patient-reported outcomes measures in medical product development to support labeling claims, in which patient-reported outcomes (PROs) are advocated for measuring subjective experiences of patients related both to treatment benefit and risk [12,19].…”

Section: Discussionmentioning

confidence: 94%

Stakeholder perspectives on implementing the National Cancer Institute’s patient-reported outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE)

Bruner

Hanisch

Reeve

et al. 2011

Behav. Med. Pract. Policy Res.

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The National Cancer Institute (NCI) is developing a patientreported version of its Common Terminology Criteria for Adverse Events, called the "PRO-CTCAE." The PRO-CTCAE consists of a library of patient-reported items which can be administered in clinical trials to directly capture the patient experience of adverse events during cancer treatment, as well as a software platform for administering these items via computer or telephone. In order to better understand the impressions of stakeholders involved in cancer clinical research about the potential value of the PRO-CTCAE approach to capturing adverse event information in clinical research, as well as their perspectives about barriers and strategies for implementing the PRO-CTCAE in NCI-sponsored cancer trials, a survey was conducted. A survey including structured and open-ended questions was developed to elicit perceptions about the use of patient-reported outcomes (PROs) for adverse event reporting, and to explore logistical considerations for implementing the PRO-CTCAE in cancer trials. The survey was distributed electronically and by paper to a convenience sample of leadership and committee members in the NCI's cooperative group network, including principal investigators, clinical investigators, research nurses, data managers, patient advocates, and representatives of the NCI and Food and Drug Administration. Between October, 2008 through February, 2009, 727 surveys were collected. Most respondents (93%) agreed that patient reporting of adverse symptoms would be useful for improving understanding of the patient experience with treatment in cancer trials, and 88%, 80%, and 76%, respectively, endorsed that administration of PRO-CTCAE items in clinical trials would improve the completeness, accuracy, and efficiency of symptom data collection. More than three fourths believed that patient reports would be useful for informing treatment dose modifications and towards FDA regulatory evaluation of drugs. Eighty-eight percent felt that patients in clinical trials would be willing to self-report adverse symptoms at clinic visits via computer, and 68% felt patients would self-report weekly from home via the internet or an automated telephone system. Lack of computers and limited space and personnel were seen as potential barriers to in-clinic selfreporting, but these were judged to be surmountable with adequate funding. The PRO-CTCAE items and software are viewed by a majority of survey respondents as a means to improve adverse event data quality and comprehensiveness, enhance clinical decision-making, and foster patient-clinician communication. Research is ongoing to assess the measurement properties and feasibility of implementing this measure in cancer clinical trials.

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Measuring Quality of Life in Routine Oncology Practice Improves Communication and Patient Well-Being: A Randomized Controlled Trial

Abstract: Routine assessment of cancer patients' HRQL had an impact on physician-patient communication and resulted in benefits for some patients, who had better HRQL and emotional functioning.

Cited by 1,188 publications

References 28 publications

Meeting the support and information needs of women with advanced breast cancer: a randomised controlled trial

Meeting the support and information needs of women with advanced breast cancer: a randomised controlled trial

Living with Intoxication-Type Inborn Errors of Metabolism: A Qualitative Analysis of Interviews with Paediatric Patients and Their Parents

Stakeholder perspectives on implementing the National Cancer Institute’s patient-reported outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE)

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